Re: We have a NEW MEMBER -- Dawn

[Guest guest]

Welcome Dawn. I am assuming your name is Dawn from your email address. If I'm wrong please correct me!When were you diagnosed? How bad is your optic neuritis? I had my first bout of ON last September and it was pretty miserable. I have the ON pain recurring off and on. What is your ON like?Does the Raynauds come and go? Sometimes I have extreme pain when my hands get cold but other times it's fine. That is a symptom of Raynauds, isn't it? Your family has a lot of MS! How long has your mom had MS and how is she doing? How does she feel about your diagnosis?hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. From: Sharon

To: Group <mserslife >Sent: Thu, May 26, 2011 9:10:44 PMSubject: We have a NEW MEMBER -- Dawn

Comment from new member: Dawn"I was recently diagnosed with MS & am dealing with optic neuritis,nervepain,burning, numbness,and Raynauds. My mom has MS & my brother & sister aresuspected of having MS. I need to learn more about it."

Group: please join me in extending a warm welcome to our newest member here at MSersLife!

I know we all look forward to getting to know our new member here on the group! New Member:Please feel free to send an introduction as soon as you wish, ask any questions you want, share your experiences with all of us and just jump into the conversations!

Sharon (group creator/owner) This

email is a natural hand made product. The slight variations in spelling

and grammar enhance its individual character and beauty and in no way

are to be considered flaws or defects.

[Guest guest]

Greetings and Welcome, Dawn!

in WY

Practical Blackwork Designs

http://practicalblackwork.com

http://practical-blackwork.blogspot.com  

" You get a wonderful view from the point of no return... "

We have a NEW MEMBER -- Dawn

 

Comment from new member: Dawn

" I was recently diagnosed with MS & am dealing with optic neuritis,nerve

pain,burning, numbness,and Raynauds. My mom has MS & my brother &sister are

suspected of having MS. I need to learn more about it. "

 

Group: please join me in extending a warm welcome to our newest member here

at MSersLife! 

I know we all look forward to getting to know our new member here on the

group! 

New Member:

Please feel free to send an introduction as soon as you wish, ask any

questions you want, share your experiences with all of us and just jump into

the conversations! 

 

Sharon (group creator/owner)

This email is a natural hand made product. The slight variations in spelling

and grammar enhance its individual character and beauty and in no way are to

be considered flaws or defects.

[Guest guest]

Greetings and Welcome, Dawn!

in WY

Practical Blackwork Designs

http://practicalblackwork.com

http://practical-blackwork.blogspot.com  

" You get a wonderful view from the point of no return... "

We have a NEW MEMBER -- Dawn

 

Comment from new member: Dawn

" I was recently diagnosed with MS & am dealing with optic neuritis,nerve

pain,burning, numbness,and Raynauds. My mom has MS & my brother &sister are

suspected of having MS. I need to learn more about it. "

 

Group: please join me in extending a warm welcome to our newest member here

at MSersLife! 

I know we all look forward to getting to know our new member here on the

group! 

New Member:

Please feel free to send an introduction as soon as you wish, ask any

questions you want, share your experiences with all of us and just jump into

the conversations! 

 

Sharon (group creator/owner)

This email is a natural hand made product. The slight variations in spelling

and grammar enhance its individual character and beauty and in no way are to

be considered flaws or defects.

[Guest guest]

Greetings and Welcome, Dawn!

in WY

Practical Blackwork Designs

http://practicalblackwork.com

http://practical-blackwork.blogspot.com  

" You get a wonderful view from the point of no return... "

We have a NEW MEMBER -- Dawn

 

Comment from new member: Dawn

" I was recently diagnosed with MS & am dealing with optic neuritis,nerve

pain,burning, numbness,and Raynauds. My mom has MS & my brother &sister are

suspected of having MS. I need to learn more about it. "

 

Group: please join me in extending a warm welcome to our newest member here

at MSersLife! 

I know we all look forward to getting to know our new member here on the

group! 

New Member:

Please feel free to send an introduction as soon as you wish, ask any

questions you want, share your experiences with all of us and just jump into

the conversations! 

 

Sharon (group creator/owner)

This email is a natural hand made product. The slight variations in spelling

and grammar enhance its individual character and beauty and in no way are to

be considered flaws or defects.

[Guest guest]

Welcome to the group Dawn.

Hugs

nne

To the world you might be one person, but to one person you just might be the world""May the Lord Bless you and keep you,May the Lord Make his face shine upon you, and give you Peace...Forever"Breast Cancer Patients Soul Mates for Lifehttp://breastcancerpatientssoulmatesforlife.bravehost.com/ Anxiety Depression and Breast Cancerhttp://health.groups.yahoo.com/group/AnxietyDepressionandBreastCancerAngel Feather Loomerwww.angelfeatherloomer.blogspot.comThe Cancer Clubwww.cancerclub.com

-----Original Message-----From: wobbletowalk@...Sent: Thu, 26 May 2011 21:10:44 -0700 (PDT)To: mserslife Subject: We have a NEW MEMBER -- Dawn

Comment from new member: Dawn"I was recently diagnosed with MS & am dealing with optic neuritis,nervepain,burning, numbness,and Raynauds. My mom has MS & my brother & sister aresuspected of having MS. I need to learn more about it."

Group: please join me in extending a warm welcome to our newest member here at MSersLife!

I know we all look forward to getting to know our new member here on the group! New Member:Please feel free to send an introduction as soon as you wish, ask any questions you want, share your experiences with all of us and just jump into the conversations!

Sharon (group creator/owner)

This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

Publish your photos in seconds for FREE

Try IM ToolPack at www.imtoolpack.com

[Guest guest]

Welcome to the group Dawn.

Hugs

nne

To the world you might be one person, but to one person you just might be the world""May the Lord Bless you and keep you,May the Lord Make his face shine upon you, and give you Peace...Forever"Breast Cancer Patients Soul Mates for Lifehttp://breastcancerpatientssoulmatesforlife.bravehost.com/ Anxiety Depression and Breast Cancerhttp://health.groups.yahoo.com/group/AnxietyDepressionandBreastCancerAngel Feather Loomerwww.angelfeatherloomer.blogspot.comThe Cancer Clubwww.cancerclub.com

-----Original Message-----From: wobbletowalk@...Sent: Thu, 26 May 2011 21:10:44 -0700 (PDT)To: mserslife Subject: We have a NEW MEMBER -- Dawn

Comment from new member: Dawn"I was recently diagnosed with MS & am dealing with optic neuritis,nervepain,burning, numbness,and Raynauds. My mom has MS & my brother & sister aresuspected of having MS. I need to learn more about it."

Group: please join me in extending a warm welcome to our newest member here at MSersLife!

I know we all look forward to getting to know our new member here on the group! New Member:Please feel free to send an introduction as soon as you wish, ask any questions you want, share your experiences with all of us and just jump into the conversations!

Sharon (group creator/owner)

This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

Publish your photos in seconds for FREE

Try IM ToolPack at www.imtoolpack.com

[Guest guest]

Welcome to the group Dawn.

Hugs

nne

To the world you might be one person, but to one person you just might be the world""May the Lord Bless you and keep you,May the Lord Make his face shine upon you, and give you Peace...Forever"Breast Cancer Patients Soul Mates for Lifehttp://breastcancerpatientssoulmatesforlife.bravehost.com/ Anxiety Depression and Breast Cancerhttp://health.groups.yahoo.com/group/AnxietyDepressionandBreastCancerAngel Feather Loomerwww.angelfeatherloomer.blogspot.comThe Cancer Clubwww.cancerclub.com

-----Original Message-----From: wobbletowalk@...Sent: Thu, 26 May 2011 21:10:44 -0700 (PDT)To: mserslife Subject: We have a NEW MEMBER -- Dawn

Comment from new member: Dawn"I was recently diagnosed with MS & am dealing with optic neuritis,nervepain,burning, numbness,and Raynauds. My mom has MS & my brother & sister aresuspected of having MS. I need to learn more about it."

Group: please join me in extending a warm welcome to our newest member here at MSersLife!

I know we all look forward to getting to know our new member here on the group! New Member:Please feel free to send an introduction as soon as you wish, ask any questions you want, share your experiences with all of us and just jump into the conversations!

Sharon (group creator/owner)

This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

Publish your photos in seconds for FREE

Try IM ToolPack at www.imtoolpack.com

[Guest guest]

Welcome from Lawton - Fort Sill, OK the gateway to the beautiful Wichita Mountains God, grant me the strength of eagles wings, the faith and courage to fly to new heights, and the wisdom to rely on his spirit to carry me there.

To: Group <mserslife >Sent: Thu, May 26, 2011 11:10:44 PMSubject: We have a NEW MEMBER -- Dawn

Comment from new member: Dawn"I was recently diagnosed with MS & am dealing with optic neuritis,nervepain,burning, numbness,and Raynauds. My mom has MS & my brother & sister aresuspected of having MS. I need to learn more about it."

Group: please join me in extending a warm welcome to our newest member here at MSersLife!

I know we all look forward to getting to know our new member here on the group! New Member:Please feel free to send an introduction as soon as you wish, ask any questions you want, share your experiences with all of us and just jump into the conversations!

Sharon (group creator/owner)

This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

[Guest guest]

welcome Dawn~ I am new to the group as well and am still sorting who is where and what...hope you enjoy it as much as I have! I'm in sw Illinois, have had ms dx since 2003, and in my mid 40's. Not really any symptoms at this time but took avonex for 6 yrs and a year and half off before starting copaxone, 3 mo. now. weee. The members here have much more experience than myself and such a positive approach which I really need in my state of denial~ blessings and welcome.DeeTo: Group <mserslife >Sent: Thu, May 26, 2011 11:10:44 PMSubject: We have a NEW MEMBER -- Dawn

Comment from new member: Dawn"I was recently diagnosed with MS & am dealing with optic neuritis,nervepain,burning, numbness,and Raynauds. My mom has MS & my brother & sister aresuspected of having MS. I need to learn more about it."

Group: please join me in extending a warm welcome to our newest member here at MSersLife!

I know we all look forward to getting to know our new member here on the group! New Member:Please feel free to send an introduction as soon as you wish, ask any questions you want, share your experiences with all of us and just jump into the conversations!

Sharon (group creator/owner) This

email is a natural hand made product. The slight variations in spelling

and grammar enhance its individual character and beauty and in no way

are to be considered flaws or defects.

[Guest guest]

Welcome to the group, Dawn! You came to the right place. We are a bunch of warm, knowledgeable, humorous and supportive folk. We're sorry about your new diagnosis; how long ago was your mom dx'd.? Ask away as far as questions go. We're here for you!hugs,Kate in NYTo: Group <mserslife >Sent: Fri, May 27, 2011 12:10:44 AMSubject: We have a NEW MEMBER -- Dawn

Comment from new member: Dawn"I was recently diagnosed with MS & am dealing with optic neuritis,nervepain,burning, numbness,and Raynauds. My mom has MS & my brother & sister aresuspected of having MS. I need to learn more about it."

Group: please join me in extending a warm welcome to our newest member here at MSersLife!

I know we all look forward to getting to know our new member here on the group! New Member:Please feel free to send an introduction as soon as you wish, ask any questions you want, share your experiences with all of us and just jump into the conversations!

Sharon (group creator/owner) This

email is a natural hand made product. The slight variations in spelling

and grammar enhance its individual character and beauty and in no way

are to be considered flaws or defects.

[Guest guest]

Welcome to the group. Margaret A. CoteTo: Group <mserslife >Sent: Thu, May 26, 2011 11:10:44 PMSubject: We have a NEW MEMBER -- Dawn

Comment from new member: Dawn"I was recently diagnosed with MS & am dealing with optic neuritis,nervepain,burning, numbness,and Raynauds. My mom has MS & my brother & sister aresuspected of having MS. I need to learn more about it."

Group: please join me in extending a warm welcome to our newest member here at MSersLife!

I know we all look forward to getting to know our new member here on the group! New Member:Please feel free to send an introduction as soon as you wish, ask any questions you want, share your experiences with all of us and just jump into the conversations!

Sharon (group creator/owner) This

email is a natural hand made product. The slight variations in spelling

and grammar enhance its individual character and beauty and in no way

are to be considered flaws or defects.

[Guest guest]

welcome to the group Dawn

ann

We have a NEW MEMBER -- Dawn

Comment from new member: Dawn"I was recently diagnosed with MS & am dealing with optic neuritis,nervepain,burning, numbness,and Raynauds. My mom has MS & my brother & sister aresuspected of having MS. I need to learn more about it."

Group: please join me in extending a warm welcome to our newest member here at MSersLife!

I know we all look forward to getting to know our new member here on the group! New Member:Please feel free to send an introduction as soon as you wish, ask any questions you want, share your experiences with all of us and just jump into the conversations!

Sharon (group creator/owner)

This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

[Guest guest]

Thanks all for the welcome.

Here's a little more info about me:

I am Dawn Schaller, a 50 year old married woman with a 13 year old daughter. I

live in Michigan in the suburbs of Detroit.

I have had Ehlers-Danlos Syndrome (a connective tissue disorder causing

hypermobility among other things) and various neurological issues since I was a

kid (postural orthostatic tachycardia syndrome, fainting when injured, given

injections, or having blood drawn, chronic bilateral vascular headaches for 1.5

years straight, etc.). My neurological problems have gotten worse in the last

four years with the last 8 months the worst long time period and the last six

weeks much worse. I had Reyes Syndrome when I was 15 years old after taking

aspirin to bring down a fever and deal with a headache from flu/strep throat.

In the last six weeks I have developed Raynaud's (if my feet are exposed to

slightly cool temperatures I am losing all circulation, resulting in really cold

feet and much reduced feeling in my feet); a " headache " with semi numbness that

I cannot shake that is basically from my ears down to my shoulders, all around

my head, but especially in the back of my head and neck (I suspect CCVSI, but I

have absolutely no idea what else it could be if not that); 2.5 " diameter spots

on my right heel and ball of my foot that feel like I had local anesthesia put

in and feeling is just starting to come back; less strength in my right

foot/ankle/hamstring muscle (per the doctor, I don't notice it); I have about

two minutes notice that I have to go to the bathroom (both ways) and I have some

urinary incontinence - back to wearing a pad; burning on the bottom of my feet

if they get even slightly warm (wearing socks or shoes will bring it on); optic

neuritis (just slightly double vision that makes everything but things far away

blurry, close vision is gone except if I wear reading glasses, but even then I

have to blink one eye shut, occasional mild pain in the eyes); a feeling like I

have a binder around my ribcage making it hard to breathe; a shortness of breath

and coughing up phlem that has not been fixed by prednisone (sp?), guaifenisin

(sp?), and Advair (may be unrelated - I have a cat scan scheduled now due to a

nodule they found in my lung - probably from a previous lung infection);

executive function problems (inability to focus - adult ADD, memory horrible,

can't grasp things I normally fully understand - very scary for me); " muscle

jumping " in various muscles for about 15 seconds at a time; far less feeling in

my hands and feet; constant burning pain in my left pinky finger and going up my

hand to my wrist when I am tired or late in the day; fatigue; and severe

depression.

My family is suspected, but not yet confirmed to have a mito disorder (my guess

is MELAS, but I have been in contact with a woman whose family has all of my

family's problems and her family was the first IDed with a particular mito

defect). After having the various weird neurological, connective tissue, and

autonomic issues that have come and gone (or stayed) since my teens, I have had

new memory, executive function, pain, burning, numbness, and other nerve

problems that have popped up recently, so my doctor sent me to a neurologist for

evaluation/testing for MS. All my tests came up positive for MS, but the doctor

says that with those test results, I should have more/different symptoms (tests

were all before the exacerbation of the last 6 weeks). My spinal tap and blood

test results showed I have 8 oligoclonal bands in spinal fluid and none in

blood, two small T2 lesions in my brain MRI, and elevated IgG index. The

neurologist referred me to the Cleveland Clinic to see an MS specialist and a

mitochondrial disorder specialist.

When I went to see the MS specialists earlier this month at the Cleveland

Clinic, they said that they believe that I have MS and transverse myelitis based

on current test results and symptoms (although I have not had an MRI of my

spine), and probably other autoimmune disorders, but they say that the course

has not been clearly relapsing-remitting or progressive, and that MS and TM

would not account for all of my symptoms. They believe there is something else

going on and that a mitochondrial disorder is a possibility, so they want me to

see the mitochondrial specialist at the Cleveland Clinic also.

My mom has Ehlers-Danlos Syndrome also, ADD and learning disabilities, and was

diagnosed with relapsing/remitting multiple sclerosis about 8 or 10 years ago,

but her neurologist also says her MS is non-standard. My sister has has

Ehlers-Danlos Syndrome and has had optic neuritis eight times (but not

officially diagnosed with MS because she cannot have an MRI), nerve pain,

numbness, hypoglycemia, and several other neurological issues. Her son has

sensory issues, intense ADHD, and Asperger's Syndrome. Her daughter has

Ehler-Danlos Syndrome and severe allergies/asthma. My brother has had drug

resistant depression since he was in elementary school, optic neuritis (tested

for MS, but can't have an MRI and other testing was inconclusive), lots of nerve

issues, ADD, and small fiber neuropathy. I suspect he has Asperger's syndrome

also, but has not been diagnosed. My aunt had ADD and learning disabilities, and

has had hypoglycemia her entire life. She has five daughters, a son, and 10

grandchildren from her daughters. Most of her children and grandchildren (even

the kids) have ADD and drug resistant depression. Her son has POTS. Three

daughter have chronic pain syndromes that won't clear. One daughter has

Scleroderma, Raynaud's, and Sjogrens. That daughter's 22 year old daughter has

Lupus Nephritis and her son has Asperger's Syndrome. Two of my mother's male

cousins also had MS (since deceased). One of my grandmother's sisters died from

hydrocephalus at age 5 years and a brother died from meningitis at about the

same age.

My 13 year old daughter has had multiple chronic health issues since she was

born. She also has Ehlers-Danlos Syndrome and still has sensory issues, ADD,

nonverbal learning disability, postural orthostatic tachycardia syndrome (POTS -

pulse goes from 48 laying down to 155 standing up and her BP is also affected),

kidney problems, hormonal issues, and hypoglycemia. She has had severe health

deterioration since she entered puberty 10 months ago - depression; wild mood

swings; uncontrolled anger; anxiety; need for 10 - 12 hours of sleep per day;

her hormones are all messed up because her periods have gone from 3 28 day

" normal " cycles, to 8 days of basically hemorrhaging (unable to go to school),

followed by 3 days of spotting, to 24 days of spotting after a 60 day cycle;

inability to focus; grades dropped two grade levels. A year before all that

started last July, she developed gross hematuria from her kidneys without

protein when she was really active, which seems to have calmed down (but not

gone away). She also had a mildly positive ANA test result that the kidney

doctor said wasn't anything to worry about 18 months ago. She has now developed

intermittent microhematuria still without protein, so her kidney specialist is

not tremendously concerned. He could do a kidney biopsy, but he said that is

tremendously invasive, painful, and expensive, so he is not inclined to push it

unless things get much worse in the kidney arena or we demand it.

The mito doctor wants to see me, but he wants a neuro-opthomologist and

neuro-psych evaluations and some very specialized urine and blood tests done at

the Cleveland Clinic before I come to see him. I am having all that work done

next week and hope to have a quick appointment to see him, but I am not holding

my breath. The MS doctor said the mito doctor really wants to see me and he

will take me earlier than the standard waiting period, but time will tell what

will actually happen.

I am a project manager and am having problems keeping up with my work. If this

progression doesn't stop and go back at least close to where I was before it

started, I don't know how I can keep up with the level of work I am expected to

perform.

I am looking forward to being a part of this group and learning as much as I

can.

Thanks for the welcome.

Dawn S.

[Guest guest]

Oh, I forgot to mention - My normal body temperature is low - 97.1 degrees is

average for me and I am sick if it gets to 98.6. I also can't tolerate heat

(haven't been able to since my teens). I don't sweat normally. I only really

sweat on my head, so when I get over heated, I start to turn purple, my

temperature rises, and I may faint if I don't cool myself down some how, but

those issues are not new. If I work in the yard I have to have a wet towel

wrapped around my neck and hanging down the front of my shirt to keep me cool.

I know there are cooling vests you can buy, but I have not gone to that next

step yet.

Thanks.

Dawn S.

>

> Thanks all for the welcome.

>

> Here's a little more info about me:

>

> I am Dawn Schaller, a 50 year old married woman with a 13 year old daughter.

I live in Michigan in the suburbs of Detroit.

>

> I have had Ehlers-Danlos Syndrome (a connective tissue disorder causing

hypermobility among other things) and various neurological issues since I was a

kid (postural orthostatic tachycardia syndrome, fainting when injured, given

injections, or having blood drawn, chronic bilateral vascular headaches for 1.5

years straight, etc.). My neurological problems have gotten worse in the last

four years with the last 8 months the worst long time period and the last six

weeks much worse. I had Reyes Syndrome when I was 15 years old after taking

aspirin to bring down a fever and deal with a headache from flu/strep throat.

>

> In the last six weeks I have developed Raynaud's (if my feet are exposed to

slightly cool temperatures I am losing all circulation, resulting in really cold

feet and much reduced feeling in my feet); a " headache " with semi numbness that

I cannot shake that is basically from my ears down to my shoulders, all around

my head, but especially in the back of my head and neck (I suspect CCVSI, but I

have absolutely no idea what else it could be if not that); 2.5 " diameter spots

on my right heel and ball of my foot that feel like I had local anesthesia put

in and feeling is just starting to come back; less strength in my right

foot/ankle/hamstring muscle (per the doctor, I don't notice it); I have about

two minutes notice that I have to go to the bathroom (both ways) and I have some

urinary incontinence - back to wearing a pad; burning on the bottom of my feet

if they get even slightly warm (wearing socks or shoes will bring it on); optic

neuritis (just slightly double vision that makes everything but things far away

blurry, close vision is gone except if I wear reading glasses, but even then I

have to blink one eye shut, occasional mild pain in the eyes); a feeling like I

have a binder around my ribcage making it hard to breathe; a shortness of breath

and coughing up phlem that has not been fixed by prednisone (sp?), guaifenisin

(sp?), and Advair (may be unrelated - I have a cat scan scheduled now due to a

nodule they found in my lung - probably from a previous lung infection);

executive function problems (inability to focus - adult ADD, memory horrible,

can't grasp things I normally fully understand - very scary for me); " muscle

jumping " in various muscles for about 15 seconds at a time; far less feeling in

my hands and feet; constant burning pain in my left pinky finger and going up my

hand to my wrist when I am tired or late in the day; fatigue; and severe

depression.

>

> My family is suspected, but not yet confirmed to have a mito disorder (my

guess is MELAS, but I have been in contact with a woman whose family has all of

my family's problems and her family was the first IDed with a particular mito

defect). After having the various weird neurological, connective tissue, and

autonomic issues that have come and gone (or stayed) since my teens, I have had

new memory, executive function, pain, burning, numbness, and other nerve

problems that have popped up recently, so my doctor sent me to a neurologist for

evaluation/testing for MS. All my tests came up positive for MS, but the doctor

says that with those test results, I should have more/different symptoms (tests

were all before the exacerbation of the last 6 weeks). My spinal tap and blood

test results showed I have 8 oligoclonal bands in spinal fluid and none in

blood, two small T2 lesions in my brain MRI, and elevated IgG index. The

neurologist referred me to the Cleveland Clinic to see an MS specialist and a

mitochondrial disorder specialist.

>

> When I went to see the MS specialists earlier this month at the Cleveland

Clinic, they said that they believe that I have MS and transverse myelitis based

on current test results and symptoms (although I have not had an MRI of my

spine), and probably other autoimmune disorders, but they say that the course

has not been clearly relapsing-remitting or progressive, and that MS and TM

would not account for all of my symptoms. They believe there is something else

going on and that a mitochondrial disorder is a possibility, so they want me to

see the mitochondrial specialist at the Cleveland Clinic also.

>

> My mom has Ehlers-Danlos Syndrome also, ADD and learning disabilities, and was

diagnosed with relapsing/remitting multiple sclerosis about 8 or 10 years ago,

but her neurologist also says her MS is non-standard. My sister has has

Ehlers-Danlos Syndrome and has had optic neuritis eight times (but not

officially diagnosed with MS because she cannot have an MRI), nerve pain,

numbness, hypoglycemia, and several other neurological issues. Her son has

sensory issues, intense ADHD, and Asperger's Syndrome. Her daughter has

Ehler-Danlos Syndrome and severe allergies/asthma. My brother has had drug

resistant depression since he was in elementary school, optic neuritis (tested

for MS, but can't have an MRI and other testing was inconclusive), lots of nerve

issues, ADD, and small fiber neuropathy. I suspect he has Asperger's syndrome

also, but has not been diagnosed. My aunt had ADD and learning disabilities, and

has had hypoglycemia her entire life. She has five daughters, a son, and 10

grandchildren from her daughters. Most of her children and grandchildren (even

the kids) have ADD and drug resistant depression. Her son has POTS. Three

daughter have chronic pain syndromes that won't clear. One daughter has

Scleroderma, Raynaud's, and Sjogrens. That daughter's 22 year old daughter has

Lupus Nephritis and her son has Asperger's Syndrome. Two of my mother's male

cousins also had MS (since deceased). One of my grandmother's sisters died from

hydrocephalus at age 5 years and a brother died from meningitis at about the

same age.

>

> My 13 year old daughter has had multiple chronic health issues since she was

born. She also has Ehlers-Danlos Syndrome and still has sensory issues, ADD,

nonverbal learning disability, postural orthostatic tachycardia syndrome (POTS -

pulse goes from 48 laying down to 155 standing up and her BP is also affected),

kidney problems, hormonal issues, and hypoglycemia. She has had severe health

deterioration since she entered puberty 10 months ago - depression; wild mood

swings; uncontrolled anger; anxiety; need for 10 - 12 hours of sleep per day;

her hormones are all messed up because her periods have gone from 3 28 day

" normal " cycles, to 8 days of basically hemorrhaging (unable to go to school),

followed by 3 days of spotting, to 24 days of spotting after a 60 day cycle;

inability to focus; grades dropped two grade levels. A year before all that

started last July, she developed gross hematuria from her kidneys without

protein when she was really active, which seems to have calmed down (but not

gone away). She also had a mildly positive ANA test result that the kidney

doctor said wasn't anything to worry about 18 months ago. She has now developed

intermittent microhematuria still without protein, so her kidney specialist is

not tremendously concerned. He could do a kidney biopsy, but he said that is

tremendously invasive, painful, and expensive, so he is not inclined to push it

unless things get much worse in the kidney arena or we demand it.

>

> The mito doctor wants to see me, but he wants a neuro-opthomologist and

neuro-psych evaluations and some very specialized urine and blood tests done at

the Cleveland Clinic before I come to see him. I am having all that work done

next week and hope to have a quick appointment to see him, but I am not holding

my breath. The MS doctor said the mito doctor really wants to see me and he

will take me earlier than the standard waiting period, but time will tell what

will actually happen.

>

> I am a project manager and am having problems keeping up with my work. If

this progression doesn't stop and go back at least close to where I was before

it started, I don't know how I can keep up with the level of work I am expected

to perform.

>

> I am looking forward to being a part of this group and learning as much as I

can.

>

> Thanks for the welcome.

>

> Dawn S.

>

[Guest guest]

Oh my Dawn I am so sorry to hear you have all these problems. You are in my

prayers.

Hugs

nne

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world "

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May the Lord Make his face shine upon you, and give you Peace...Forever "

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> Re: We have a NEW MEMBER -- Dawn

>

> Thanks all for the welcome.

>

> Here's a little more info about me:

>

> I am Dawn Schaller, a 50 year old married woman with a 13 year old

> daughter. I live in Michigan in the suburbs of Detroit.

>

> I have had Ehlers-Danlos Syndrome (a connective tissue disorder causing

> hypermobility among other things) and various neurological issues since I

> was a kid (postural orthostatic tachycardia syndrome, fainting when

> injured, given injections, or having blood drawn, chronic bilateral

> vascular headaches for 1.5 years straight, etc.). My neurological

> problems have gotten worse in the last four years with the last 8 months

> the worst long time period and the last six weeks much worse. I had

> Reyes Syndrome when I was 15 years old after taking aspirin to bring down

> a fever and deal with a headache from flu/strep throat.

>

> In the last six weeks I have developed Raynaud's (if my feet are exposed

> to slightly cool temperatures I am losing all circulation, resulting in

> really cold feet and much reduced feeling in my feet); a " headache " with

> semi numbness that I cannot shake that is basically from my ears down to

> my shoulders, all around my head, but especially in the back of my head

> and neck (I suspect CCVSI, but I have absolutely no idea what else it

> could be if not that); 2.5 " diameter spots on my right heel and ball of

> my foot that feel like I had local anesthesia put in and feeling is just

> starting to come back; less strength in my right foot/ankle/hamstring

> muscle (per the doctor, I don't notice it); I have about two minutes

> notice that I have to go to the bathroom (both ways) and I have some

> urinary incontinence - back to wearing a pad; burning on the bottom of my

> feet if they get even slightly warm (wearing socks or shoes will bring it

> on); optic neuritis (just slightly double vision that makes everything

> but things far away blurry, close vision is gone except if I wear reading

> glasses, but even then I have to blink one eye shut, occasional mild pain

> in the eyes); a feeling like I have a binder around my ribcage making it

> hard to breathe; a shortness of breath and coughing up phlem that has not

> been fixed by prednisone (sp?), guaifenisin (sp?), and Advair (may be

> unrelated - I have a cat scan scheduled now due to a nodule they found in

> my lung - probably from a previous lung infection); executive function

> problems (inability to focus - adult ADD, memory horrible, can't grasp

> things I normally fully understand - very scary for me); " muscle jumping "

> in various muscles for about 15 seconds at a time; far less feeling in my

> hands and feet; constant burning pain in my left pinky finger and going

> up my hand to my wrist when I am tired or late in the day; fatigue; and

> severe depression.

>

> My family is suspected, but not yet confirmed to have a mito disorder (my

> guess is MELAS, but I have been in contact with a woman whose family has

> all of my family's problems and her family was the first IDed with a

> particular mito defect). After having the various weird neurological,

> connective tissue, and autonomic issues that have come and gone (or

> stayed) since my teens, I have had new memory, executive function, pain,

> burning, numbness, and other nerve problems that have popped up recently,

> so my doctor sent me to a neurologist for evaluation/testing for MS. All

> my tests came up positive for MS, but the doctor says that with those

> test results, I should have more/different symptoms (tests were all

> before the exacerbation of the last 6 weeks). My spinal tap and blood

> test results showed I have 8 oligoclonal bands in spinal fluid and none

> in blood, two small T2 lesions in my brain MRI, and elevated IgG index.

> The neurologist referred me to the Cleveland Clinic to see an MS

> specialist and a mitochondrial disorder specialist.

>

> When I went to see the MS specialists earlier this month at the Cleveland

> Clinic, they said that they believe that I have MS and transverse

> myelitis based on current test results and symptoms (although I have not

> had an MRI of my spine), and probably other autoimmune disorders, but

> they say that the course has not been clearly relapsing-remitting or

> progressive, and that MS and TM would not account for all of my symptoms.

> They believe there is something else going on and that a mitochondrial

> disorder is a possibility, so they want me to see the mitochondrial

> specialist at the Cleveland Clinic also.

>

> My mom has Ehlers-Danlos Syndrome also, ADD and learning disabilities,

> and was diagnosed with relapsing/remitting multiple sclerosis about 8 or

> 10 years ago, but her neurologist also says her MS is non-standard. My

> sister has has Ehlers-Danlos Syndrome and has had optic neuritis eight

> times (but not officially diagnosed with MS because she cannot have an

> MRI), nerve pain, numbness, hypoglycemia, and several other neurological

> issues. Her son has sensory issues, intense ADHD, and Asperger's

> Syndrome. Her daughter has Ehler-Danlos Syndrome and severe

> allergies/asthma. My brother has had drug resistant depression since he

> was in elementary school, optic neuritis (tested for MS, but can't have

> an MRI and other testing was inconclusive), lots of nerve issues, ADD,

> and small fiber neuropathy. I suspect he has Asperger's syndrome also,

> but has not been diagnosed. My aunt had ADD and learning disabilities,

> and has had hypoglycemia her entire life. She has five daughters, a son,

> and 10 grandchildren from her daughters. Most of her children and

> grandchildren (even the kids) have ADD and drug resistant depression. Her

> son has POTS. Three daughter have chronic pain syndromes that won't

> clear. One daughter has Scleroderma, Raynaud's, and Sjogrens. That

> daughter's 22 year old daughter has Lupus Nephritis and her son has

> Asperger's Syndrome. Two of my mother's male cousins also had MS (since

> deceased). One of my grandmother's sisters died from hydrocephalus at age

> 5 years and a brother died from meningitis at about the same age.

>

> My 13 year old daughter has had multiple chronic health issues since she

> was born. She also has Ehlers-Danlos Syndrome and still has sensory

> issues, ADD, nonverbal learning disability, postural orthostatic

> tachycardia syndrome (POTS - pulse goes from 48 laying down to 155

> standing up and her BP is also affected), kidney problems, hormonal

> issues, and hypoglycemia. She has had severe health deterioration since

> she entered puberty 10 months ago - depression; wild mood swings;

> uncontrolled anger; anxiety; need for 10 - 12 hours of sleep per day; her

> hormones are all messed up because her periods have gone from 3 28 day

> " normal " cycles, to 8 days of basically hemorrhaging (unable to go to

> school), followed by 3 days of spotting, to 24 days of spotting after a

> 60 day cycle; inability to focus; grades dropped two grade levels. A

> year before all that started last July, she developed gross hematuria

> from her kidneys without protein when she was really active, which seems

> to have calmed down (but not gone away). She also had a mildly positive

> ANA test result that the kidney doctor said wasn't anything to worry

> about 18 months ago. She has now developed intermittent microhematuria

> still without protein, so her kidney specialist is not tremendously

> concerned. He could do a kidney biopsy, but he said that is tremendously

> invasive, painful, and expensive, so he is not inclined to push it unless

> things get much worse in the kidney arena or we demand it.

>

> The mito doctor wants to see me, but he wants a neuro-opthomologist and

> neuro-psych evaluations and some very specialized urine and blood tests

> done at the Cleveland Clinic before I come to see him. I am having all

> that work done next week and hope to have a quick appointment to see him,

> but I am not holding my breath. The MS doctor said the mito doctor

> really wants to see me and he will take me earlier than the standard

> waiting period, but time will tell what will actually happen.

>

> I am a project manager and am having problems keeping up with my work.

> If this progression doesn't stop and go back at least close to where I

> was before it started, I don't know how I can keep up with the level of

> work I am expected to perform.

>

> I am looking forward to being a part of this group and learning as much

> as I can.

>

> Thanks for the welcome.

>

> Dawn S.

____________________________________________________________

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[Guest guest]

Welcome Dawn. Whew! You and your family have a lot going on, don't you? It is not uncommon for MSers to have family with add/adhd and Aspergers. I have a granddaughter with Aspergers. We have a former member of the group who was thought to have MS only to find out her problems were mitro. Her name is Cassy and is a total sweetheart. I know she was tested at a muscular dystrophy clinic. I stay in touch with her through Facebook. We have a member with EDS. That's .I'm glad you joined us and I hope you get all your answers soon.hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Sun, May 29, 2011 9:36:05 AMSubject: Re: We have a NEW MEMBER -- Dawn

Thanks all for the welcome.Here's a little more info about me:I am Dawn Schaller, a 50 year old married woman with a 13 year old daughter. I live in Michigan in the suburbs of Detroit. I have had Ehlers-Danlos Syndrome (a connective tissue disorder causing hypermobility among other things) and various neurological issues since I was a kid (postural orthostatic tachycardia syndrome, fainting when injured, given injections, or having blood drawn, chronic bilateral vascular headaches for 1.5 years straight, etc.). My neurological problems have gotten worse in the last four years with the last 8 months the worst long time period and the last six weeks much worse. I had Reyes Syndrome when I was 15 years old after taking aspirin to bring down a fever and deal with a headache from flu/strep throat.In the last six weeks I have developed Raynaud's (if my feet are exposed to slightly cool temperatures I am

losing all circulation, resulting in really cold feet and much reduced feeling in my feet); a "headache" with semi numbness that I cannot shake that is basically from my ears down to my shoulders, all around my head, but especially in the back of my head and neck (I suspect CCVSI, but I have absolutely no idea what else it could be if not that); 2.5" diameter spots on my right heel and ball of my foot that feel like I had local anesthesia put in and feeling is just starting to come back; less strength in my right foot/ankle/hamstring muscle (per the doctor, I don't notice it); I have about two minutes notice that I have to go to the bathroom (both ways) and I have some urinary incontinence - back to wearing a pad; burning on the bottom of my feet if they get even slightly warm (wearing socks or shoes will bring it on); optic neuritis (just slightly double vision that makes everything but things far away blurry, close vision is gone except if I wear

reading glasses, but even then I have to blink one eye shut, occasional mild pain in the eyes); a feeling like I have a binder around my ribcage making it hard to breathe; a shortness of breath and coughing up phlem that has not been fixed by prednisone (sp?), guaifenisin (sp?), and Advair (may be unrelated - I have a cat scan scheduled now due to a nodule they found in my lung - probably from a previous lung infection); executive function problems (inability to focus - adult ADD, memory horrible, can't grasp things I normally fully understand - very scary for me); "muscle jumping" in various muscles for about 15 seconds at a time; far less feeling in my hands and feet; constant burning pain in my left pinky finger and going up my hand to my wrist when I am tired or late in the day; fatigue; and severe depression. My family is suspected, but not yet confirmed to have a mito disorder (my guess is MELAS, but I have been in contact with a woman

whose family has all of my family's problems and her family was the first IDed with a particular mito defect). After having the various weird neurological, connective tissue, and autonomic issues that have come and gone (or stayed) since my teens, I have had new memory, executive function, pain, burning, numbness, and other nerve problems that have popped up recently, so my doctor sent me to a neurologist for evaluation/testing for MS. All my tests came up positive for MS, but the doctor says that with those test results, I should have more/different symptoms (tests were all before the exacerbation of the last 6 weeks). My spinal tap and blood test results showed I have 8 oligoclonal bands in spinal fluid and none in blood, two small T2 lesions in my brain MRI, and elevated IgG index. The neurologist referred me to the Cleveland Clinic to see an MS specialist and a mitochondrial disorder specialist. When I went to see the MS specialists

earlier this month at the Cleveland Clinic, they said that they believe that I have MS and transverse myelitis based on current test results and symptoms (although I have not had an MRI of my spine), and probably other autoimmune disorders, but they say that the course has not been clearly relapsing-remitting or progressive, and that MS and TM would not account for all of my symptoms. They believe there is something else going on and that a mitochondrial disorder is a possibility, so they want me to see the mitochondrial specialist at the Cleveland Clinic also. My mom has Ehlers-Danlos Syndrome also, ADD and learning disabilities, and was diagnosed with relapsing/remitting multiple sclerosis about 8 or 10 years ago, but her neurologist also says her MS is non-standard. My sister has has Ehlers-Danlos Syndrome and has had optic neuritis eight times (but not officially diagnosed with MS because she cannot have an MRI), nerve pain, numbness,

hypoglycemia, and several other neurological issues. Her son has sensory issues, intense ADHD, and Asperger's Syndrome. Her daughter has Ehler-Danlos Syndrome and severe allergies/asthma. My brother has had drug resistant depression since he was in elementary school, optic neuritis (tested for MS, but can't have an MRI and other testing was inconclusive), lots of nerve issues, ADD, and small fiber neuropathy. I suspect he has Asperger's syndrome also, but has not been diagnosed. My aunt had ADD and learning disabilities, and has had hypoglycemia her entire life. She has five daughters, a son, and 10 grandchildren from her daughters. Most of her children and grandchildren (even the kids) have ADD and drug resistant depression. Her son has POTS. Three daughter have chronic pain syndromes that won't clear. One daughter has Scleroderma, Raynaud's, and Sjogrens. That daughter's 22 year old daughter has Lupus Nephritis and her son has Asperger's Syndrome. Two

of my mother's male cousins also had MS (since deceased). One of my grandmother's sisters died from hydrocephalus at age 5 years and a brother died from meningitis at about the same age.My 13 year old daughter has had multiple chronic health issues since she was born. She also has Ehlers-Danlos Syndrome and still has sensory issues, ADD, nonverbal learning disability, postural orthostatic tachycardia syndrome (POTS - pulse goes from 48 laying down to 155 standing up and her BP is also affected), kidney problems, hormonal issues, and hypoglycemia. She has had severe health deterioration since she entered puberty 10 months ago - depression; wild mood swings; uncontrolled anger; anxiety; need for 10 - 12 hours of sleep per day; her hormones are all messed up because her periods have gone from 3 28 day "normal" cycles, to 8 days of basically hemorrhaging (unable to go to school), followed by 3 days of spotting, to 24 days of spotting after a

60 day cycle; inability to focus; grades dropped two grade levels. A year before all that started last July, she developed gross hematuria from her kidneys without protein when she was really active, which seems to have calmed down (but not gone away). She also had a mildly positive ANA test result that the kidney doctor said wasn't anything to worry about 18 months ago. She has now developed intermittent microhematuria still without protein, so her kidney specialist is not tremendously concerned. He could do a kidney biopsy, but he said that is tremendously invasive, painful, and expensive, so he is not inclined to push it unless things get much worse in the kidney arena or we demand it.The mito doctor wants to see me, but he wants a neuro-opthomologist and neuro-psych evaluations and some very specialized urine and blood tests done at the Cleveland Clinic before I come to see him. I am having all that work done next week and hope

to have a quick appointment to see him, but I am not holding my breath. The MS doctor said the mito doctor really wants to see me and he will take me earlier than the standard waiting period, but time will tell what will actually happen.I am a project manager and am having problems keeping up with my work. If this progression doesn't stop and go back at least close to where I was before it started, I don't know how I can keep up with the level of work I am expected to perform.I am looking forward to being a part of this group and learning as much as I can.Thanks for the welcome.Dawn S. ------------------------------------

[Guest guest]

Dawn, I've got nothing but "wow"! lots to keep track of you do...I hope the others can be of help as I am so new to this whole neuro-ride that I'm not going to be able to contribute much.BlessingsDeeTo: MSersLife Sent: Sun, May 29, 2011 11:36:05 AMSubject: Re: We have a NEW MEMBER -- Dawn

Thanks all for the welcome.

Here's a little more info about me:

I am Dawn Schaller, a 50 year old married woman with a 13 year old daughter. I live in Michigan in the suburbs of Detroit.

I have had Ehlers-Danlos Syndrome (a connective tissue disorder causing hypermobility among other things) and various neurological issues since I was a kid (postural orthostatic tachycardia syndrome, fainting when injured, given injections, or having blood drawn, chronic bilateral vascular headaches for 1.5 years straight, etc.). My neurological problems have gotten worse in the last four years with the last 8 months the worst long time period and the last six weeks much worse. I had Reyes Syndrome when I was 15 years old after taking aspirin to bring down a fever and deal with a headache from flu/strep throat.

In the last six weeks I have developed Raynaud's (if my feet are exposed to slightly cool temperatures I am losing all circulation, resulting in really cold feet and much reduced feeling in my feet); a "headache" with semi numbness that I cannot shake that is basically from my ears down to my shoulders, all around my head, but especially in the back of my head and neck (I suspect CCVSI, but I have absolutely no idea what else it could be if not that); 2.5" diameter spots on my right heel and ball of my foot that feel like I had local anesthesia put in and feeling is just starting to come back; less strength in my right foot/ankle/hamstring muscle (per the doctor, I don't notice it); I have about two minutes notice that I have to go to the bathroom (both ways) and I have some urinary incontinence - back to wearing a pad; burning on the bottom of my feet if they get even slightly warm (wearing socks or shoes will bring it on); optic neuritis (just slightly

double vision that makes everything but things far away blurry, close vision is gone except if I wear reading glasses, but even then I have to blink one eye shut, occasional mild pain in the eyes); a feeling like I have a binder around my ribcage making it hard to breathe; a shortness of breath and coughing up phlem that has not been fixed by prednisone (sp?), guaifenisin (sp?), and Advair (may be unrelated - I have a cat scan scheduled now due to a nodule they found in my lung - probably from a previous lung infection); executive function problems (inability to focus - adult ADD, memory horrible, can't grasp things I normally fully understand - very scary for me); "muscle jumping" in various muscles for about 15 seconds at a time; far less feeling in my hands and feet; constant burning pain in my left pinky finger and going up my hand to my wrist when I am tired or late in the day; fatigue; and severe depression.

My family is suspected, but not yet confirmed to have a mito disorder (my guess is MELAS, but I have been in contact with a woman whose family has all of my family's problems and her family was the first IDed with a particular mito defect). After having the various weird neurological, connective tissue, and autonomic issues that have come and gone (or stayed) since my teens, I have had new memory, executive function, pain, burning, numbness, and other nerve problems that have popped up recently, so my doctor sent me to a neurologist for evaluation/testing for MS. All my tests came up positive for MS, but the doctor says that with those test results, I should have more/different symptoms (tests were all before the exacerbation of the last 6 weeks). My spinal tap and blood test results showed I have 8 oligoclonal bands in spinal fluid and none in blood, two small T2 lesions in my brain MRI, and elevated IgG index. The neurologist referred me to the

Cleveland Clinic to see an MS specialist and a mitochondrial disorder specialist.

When I went to see the MS specialists earlier this month at the Cleveland Clinic, they said that they believe that I have MS and transverse myelitis based on current test results and symptoms (although I have not had an MRI of my spine), and probably other autoimmune disorders, but they say that the course has not been clearly relapsing-remitting or progressive, and that MS and TM would not account for all of my symptoms. They believe there is something else going on and that a mitochondrial disorder is a possibility, so they want me to see the mitochondrial specialist at the Cleveland Clinic also.

My mom has Ehlers-Danlos Syndrome also, ADD and learning disabilities, and was diagnosed with relapsing/remitting multiple sclerosis about 8 or 10 years ago, but her neurologist also says her MS is non-standard. My sister has has Ehlers-Danlos Syndrome and has had optic neuritis eight times (but not officially diagnosed with MS because she cannot have an MRI), nerve pain, numbness, hypoglycemia, and several other neurological issues. Her son has sensory issues, intense ADHD, and Asperger's Syndrome. Her daughter has Ehler-Danlos Syndrome and severe allergies/asthma. My brother has had drug resistant depression since he was in elementary school, optic neuritis (tested for MS, but can't have an MRI and other testing was inconclusive), lots of nerve issues, ADD, and small fiber neuropathy. I suspect he has Asperger's syndrome also, but has not been diagnosed. My aunt had ADD and learning disabilities, and has had hypoglycemia her entire life. She has five

daughters, a son, and 10 grandchildren from her daughters. Most of her children and grandchildren (even the kids) have ADD and drug resistant depression. Her son has POTS. Three daughter have chronic pain syndromes that won't clear. One daughter has Scleroderma, Raynaud's, and Sjogrens. That daughter's 22 year old daughter has Lupus Nephritis and her son has Asperger's Syndrome. Two of my mother's male cousins also had MS (since deceased). One of my grandmother's sisters died from hydrocephalus at age 5 years and a brother died from meningitis at about the same age.

My 13 year old daughter has had multiple chronic health issues since she was born. She also has Ehlers-Danlos Syndrome and still has sensory issues, ADD, nonverbal learning disability, postural orthostatic tachycardia syndrome (POTS - pulse goes from 48 laying down to 155 standing up and her BP is also affected), kidney problems, hormonal issues, and hypoglycemia. She has had severe health deterioration since she entered puberty 10 months ago - depression; wild mood swings; uncontrolled anger; anxiety; need for 10 - 12 hours of sleep per day; her hormones are all messed up because her periods have gone from 3 28 day "normal" cycles, to 8 days of basically hemorrhaging (unable to go to school), followed by 3 days of spotting, to 24 days of spotting after a 60 day cycle; inability to focus; grades dropped two grade levels. A year before all that started last July, she developed gross hematuria from her kidneys without protein when she was really active,

which seems to have calmed down (but not gone away). She also had a mildly positive ANA test result that the kidney doctor said wasn't anything to worry about 18 months ago. She has now developed intermittent microhematuria still without protein, so her kidney specialist is not tremendously concerned. He could do a kidney biopsy, but he said that is tremendously invasive, painful, and expensive, so he is not inclined to push it unless things get much worse in the kidney arena or we demand it.

The mito doctor wants to see me, but he wants a neuro-opthomologist and neuro-psych evaluations and some very specialized urine and blood tests done at the Cleveland Clinic before I come to see him. I am having all that work done next week and hope to have a quick appointment to see him, but I am not holding my breath. The MS doctor said the mito doctor really wants to see me and he will take me earlier than the standard waiting period, but time will tell what will actually happen.

I am a project manager and am having problems keeping up with my work. If this progression doesn't stop and go back at least close to where I was before it started, I don't know how I can keep up with the level of work I am expected to perform.

I am looking forward to being a part of this group and learning as much as I can.

Thanks for the welcome.

Dawn S.

[Guest guest]

I'm so sorry about all the illnesses you and your family have. My mother had several connective tissue illnesses, Raynaud's, and a very painful eye inflammation. Years ago the Mayo clinic put her on all those darn TB pills not because she had active TB but because she tested positive and had obviously been in contact with it at some point.

She was on prednisone for over 30 years and in constant pain. When her eyesight went and she had to give up her art and crafts, she died soon after. I do hope they find some way to help you. I can't sweat either and my feet are purple all the time and always have been.

Are you considering CCSVI and angioplasty? I really wish they would do it in Canada .... hugs, Cait

Re: We have a NEW MEMBER -- Dawn

Thanks all for the welcome.Here's a little more info about me:I am Dawn Schaller, a 50 year old married woman with a 13 year old daughter. I live in Michigan in the suburbs of Detroit. I have had Ehlers-Danlos Syndrome (a connective tissue disorder causing hypermobility among other things) and various neurological issues since I was a kid (postural orthostatic tachycardia syndrome, fainting when injured, given injections, or having blood drawn, chronic bilateral vascular headaches for 1.5 years straight, etc.). My neurological problems have gotten worse in the last four years with the last 8 months the worst long time period and the last six weeks much worse. I had Reyes Syndrome when I was 15 years old after taking aspirin to bring down a fever and deal with a headache from flu/strep throat.In the last six weeks I have developed Raynaud's (if my feet are exposed to slightly cool temperatures I am losing all circulation, resulting in really cold feet and much reduced feeling in my feet); a "headache" with semi numbness that I cannot shake that is basically from my ears down to my shoulders, all around my head, but especially in the back of my head and neck (I suspect CCVSI, but I have absolutely no idea what else it could be if not that); 2.5" diameter spots on my right heel and ball of my foot that feel like I had local anesthesia put in and feeling is just starting to come back; less strength in my right foot/ankle/hamstring muscle (per the doctor, I don't notice it); I have about two minutes notice that I have to go to the bathroom (both ways) and I have some urinary incontinence - back to wearing a pad; burning on the bottom of my feet if they get even slightly warm (wearing socks or shoes will bring it on); optic neuritis (just slightly double vision that makes everything but things far away blurry, close vision is gone except if I wear reading glasses, but even then I have to blink one eye shut, occasional mild pain in the eyes); a feeling like I have a binder around my ribcage making it hard to breathe; a shortness of breath and coughing up phlem that has not been fixed by prednisone (sp?), guaifenisin (sp?), and Advair (may be unrelated - I have a cat scan scheduled now due to a nodule they found in my lung - probably from a previous lung infection); executive function problems (inability to focus - adult ADD, memory horrible, can't grasp things I normally fully understand - very scary for me); "muscle jumping" in various muscles for about 15 seconds at a time; far less feeling in my hands and feet; constant burning pain in my left pinky finger and going up my hand to my wrist when I am tired or late in the day; fatigue; and severe depression. My family is suspected, but not yet confirmed to have a mito disorder (my guess is MELAS, but I have been in contact with a woman whose family has all of my family's problems and her family was the first IDed with a particular mito defect). After having the various weird neurological, connective tissue, and autonomic issues that have come and gone (or stayed) since my teens, I have had new memory, executive function, pain, burning, numbness, and other nerve problems that have popped up recently, so my doctor sent me to a neurologist for evaluation/testing for MS. All my tests came up positive for MS, but the doctor says that with those test results, I should have more/different symptoms (tests were all before the exacerbation of the last 6 weeks). My spinal tap and blood test results showed I have 8 oligoclonal bands in spinal fluid and none in blood, two small T2 lesions in my brain MRI, and elevated IgG index. The neurologist referred me to the Cleveland Clinic to see an MS specialist and a mitochondrial disorder specialist. When I went to see the MS specialists earlier this month at the Cleveland Clinic, they said that they believe that I have MS and transverse myelitis based on current test results and symptoms (although I have not had an MRI of my spine), and probably other autoimmune disorders, but they say that the course has not been clearly relapsing-remitting or progressive, and that MS and TM would not account for all of my symptoms. They believe there is something else going on and that a mitochondrial disorder is a possibility, so they want me to see the mitochondrial specialist at the Cleveland Clinic also. My mom has Ehlers-Danlos Syndrome also, ADD and learning disabilities, and was diagnosed with relapsing/remitting multiple sclerosis about 8 or 10 years ago, but her neurologist also says her MS is non-standard. My sister has has Ehlers-Danlos Syndrome and has had optic neuritis eight times (but not officially diagnosed with MS because she cannot have an MRI), nerve pain, numbness, hypoglycemia, and several other neurological issues. Her son has sensory issues, intense ADHD, and Asperger's Syndrome. Her daughter has Ehler-Danlos Syndrome and severe allergies/asthma. My brother has had drug resistant depression since he was in elementary school, optic neuritis (tested for MS, but can't have an MRI and other testing was inconclusive), lots of nerve issues, ADD, and small fiber neuropathy. I suspect he has Asperger's syndrome also, but has not been diagnosed. My aunt had ADD and learning disabilities, and has had hypoglycemia her entire life. She has five daughters, a son, and 10 grandchildren from her daughters. Most of her children and grandchildren (even the kids) have ADD and drug resistant depression. Her son has POTS. Three daughter have chronic pain syndromes that won't clear. One daughter has Scleroderma, Raynaud's, and Sjogrens. That daughter's 22 year old daughter has Lupus Nephritis and her son has Asperger's Syndrome. Two of my mother's male cousins also had MS (since deceased). One of my grandmother's sisters died from hydrocephalus at age 5 years and a brother died from meningitis at about the same age.My 13 year old daughter has had multiple chronic health issues since she was born. She also has Ehlers-Danlos Syndrome and still has sensory issues, ADD, nonverbal learning disability, postural orthostatic tachycardia syndrome (POTS - pulse goes from 48 laying down to 155 standing up and her BP is also affected), kidney problems, hormonal issues, and hypoglycemia. She has had severe health deterioration since she entered puberty 10 months ago - depression; wild mood swings; uncontrolled anger; anxiety; need for 10 - 12 hours of sleep per day; her hormones are all messed up because her periods have gone from 3 28 day "normal" cycles, to 8 days of basically hemorrhaging (unable to go to school), followed by 3 days of spotting, to 24 days of spotting after a 60 day cycle; inability to focus; grades dropped two grade levels. A year before all that started last July, she developed gross hematuria from her kidneys without protein when she was really active, which seems to have calmed down (but not gone away). She also had a mildly positive ANA test result that the kidney doctor said wasn't anything to worry about 18 months ago. She has now developed intermittent microhematuria still without protein, so her kidney specialist is not tremendously concerned. He could do a kidney biopsy, but he said that is tremendously invasive, painful, and expensive, so he is not inclined to push it unless things get much worse in the kidney arena or we demand it.The mito doctor wants to see me, but he wants a neuro-opthomologist and neuro-psych evaluations and some very specialized urine and blood tests done at the Cleveland Clinic before I come to see him. I am having all that work done next week and hope to have a quick appointment to see him, but I am not holding my breath. The MS doctor said the mito doctor really wants to see me and he will take me earlier than the standard waiting period, but time will tell what will actually happen.I am a project manager and am having problems keeping up with my work. If this progression doesn't stop and go back at least close to where I was before it started, I don't know how I can keep up with the level of work I am expected to perform.I am looking forward to being a part of this group and learning as much as I can.Thanks for the welcome.Dawn S.

[Guest guest]

You know what, until I started " hanging out " with MS folks, I never knew -

other than my mother- another person will EDS... just goes to show that all

this alphabet soup goes together, I guess!

Hope you find the answers your family needs, Dawn. Prayers!

in WY

Practical Blackwork Designs

http://practicalblackwork.com

http://practical-blackwork.blogspot.com  

" You get a wonderful view from the point of no return... "

Re: We have a NEW MEMBER -- Dawn

Thanks all for the welcome.

Here's a little more info about me:

I am Dawn Schaller, a 50 year old married woman with a 13 year old

daughter.  I live in Michigan in the suburbs of Detroit. 

I have had Ehlers-Danlos Syndrome (a connective tissue disorder causing

hypermobility among other things) and various neurological issues since I

was a kid (postural orthostatic tachycardia syndrome, fainting when injured,

given injections, or having blood drawn, chronic bilateral vascular

headaches for 1.5 years straight, etc.).  My neurological problems have

gotten worse in the last four years with the last 8 months the worst long

time period and the last six weeks much worse.  I had Reyes Syndrome when I

was 15 years old after taking aspirin to bring down a fever and deal with a

headache from flu/strep throat.

In the last six weeks I have developed Raynaud's (if my feet are exposed to

slightly cool temperatures I am losing all circulation, resulting in really

cold feet and much reduced feeling in my feet); a " headache " with semi

numbness that I cannot shake that is basically from my ears down to my

shoulders, all around my head, but especially in the back of my head and

neck (I suspect CCVSI, but I have absolutely no idea what else it could be

if not that); 2.5 " diameter spots on my right heel and ball of my foot that

feel like I had local anesthesia put in and feeling is just starting to come

back; less strength in my right foot/ankle/hamstring muscle (per the doctor,

I don't notice it); I have about two minutes notice that I have to go to the

bathroom (both ways) and I have some urinary incontinence - back to wearing

a pad; burning on the bottom of my feet if they get even slightly warm

(wearing socks or shoes will bring it on); optic neuritis (just slightly

double vision that makes everything but things far away blurry, close vision

is gone except if I wear reading glasses, but even then I have to blink one

eye shut, occasional mild pain in the eyes); a feeling like I have a binder

around my ribcage making it hard to breathe; a shortness of breath and

coughing up phlem that has not been fixed by prednisone (sp?), guaifenisin

(sp?), and Advair (may be unrelated - I have a cat scan scheduled now due to

a nodule they found in my lung - probably from a previous lung infection);

executive function problems (inability to focus - adult ADD, memory

horrible, can't grasp things I normally fully understand - very scary for

me); " muscle jumping " in various muscles for about 15 seconds at a time; far

less feeling in my hands and feet; constant burning pain in my left pinky

finger and going up my hand to my wrist when I am tired or late in the day;

fatigue; and severe depression.

My family is suspected, but not yet confirmed to have a mito disorder (my

guess is MELAS, but I have been in contact with a woman whose family has all

of my family's problems and her family was the first IDed with a particular

mito defect). After having the various weird neurological, connective

tissue, and autonomic issues that have come and gone (or stayed) since my

teens, I have had new memory, executive function, pain, burning, numbness,

and other nerve problems that have popped up recently, so my doctor sent me

to a neurologist for evaluation/testing for MS. All my tests came up

positive for MS, but the doctor says that with those test results, I should

have more/different symptoms (tests were all before the exacerbation of the

last 6 weeks). My spinal tap and blood test results showed I have 8

oligoclonal bands in spinal fluid and none in blood, two small T2 lesions in

my brain MRI, and elevated IgG index.  The neurologist referred me to the

Cleveland Clinic to see an MS specialist and a mitochondrial disorder

specialist.

When I went to see the MS specialists earlier this month at the Cleveland

Clinic, they said that they believe that I have MS and transverse myelitis

based on current test results and symptoms (although I have not had an MRI

of my spine), and probably other autoimmune disorders, but they say that the

course has not been clearly relapsing-remitting or progressive, and that MS

and TM would not account for all of my symptoms.  They believe there is

something else going on and that a mitochondrial disorder is a possibility,

so they want me to see the mitochondrial specialist at the Cleveland Clinic

also.

My mom has Ehlers-Danlos Syndrome also, ADD and learning disabilities, and

was diagnosed with relapsing/remitting multiple sclerosis about 8 or 10

years ago, but her neurologist also says her MS is non-standard. My sister

has has Ehlers-Danlos Syndrome and has had optic neuritis eight times (but

not officially diagnosed with MS because she cannot have an MRI), nerve

pain, numbness, hypoglycemia, and several other neurological issues. Her son

has sensory issues, intense ADHD, and Asperger's Syndrome. Her daughter has

Ehler-Danlos Syndrome and severe allergies/asthma. My brother has had drug

resistant depression since he was in elementary school, optic neuritis

(tested for MS, but can't have an MRI and other testing was inconclusive),

lots of nerve issues, ADD, and small fiber neuropathy. I suspect he has

Asperger's syndrome also, but has not been diagnosed. My aunt had ADD and

learning disabilities, and has had hypoglycemia her entire life. She has

five daughters, a son, and 10 grandchildren from her daughters. Most of her

children and grandchildren (even the kids) have ADD and drug resistant

depression. Her son has POTS. Three daughter have chronic pain syndromes

that won't clear. One daughter has Scleroderma, Raynaud's, and Sjogrens.

That daughter's 22 year old daughter has Lupus Nephritis and her son has

Asperger's Syndrome. Two of my mother's male cousins also had MS (since

deceased). One of my grandmother's sisters died from hydrocephalus at age 5

years and a brother died from meningitis at about the same age.

My 13 year old daughter has had multiple chronic health issues since she was

born.  She also has Ehlers-Danlos Syndrome and still has sensory issues,

ADD, nonverbal learning disability, postural orthostatic tachycardia

syndrome (POTS - pulse goes from 48 laying down to 155 standing up and her

BP is also affected), kidney problems, hormonal issues, and hypoglycemia.

She has had severe health deterioration since she entered puberty 10 months

ago - depression; wild mood swings; uncontrolled anger; anxiety; need for 10

- 12 hours of sleep per day; her hormones are all messed up because her

periods have gone from 3 28 day " normal " cycles, to 8 days of basically

hemorrhaging (unable to go to school), followed by 3 days of spotting, to 24

days of spotting after a 60 day cycle; inability to focus; grades dropped

two grade levels.  A year before all that started last July, she developed

gross hematuria from her kidneys without protein when she was really active,

which seems to have calmed down (but not gone away). She also had a mildly

positive ANA test result that the kidney doctor said wasn't anything to

worry about 18 months ago. She has now developed intermittent microhematuria

still without protein, so her kidney specialist is not tremendously

concerned. He could do a kidney biopsy, but he said that is tremendously

invasive, painful, and expensive, so he is not inclined to push it unless

things get much worse in the kidney arena or we demand it.

The mito doctor wants to see me, but he wants a neuro-opthomologist and

neuro-psych evaluations and some very specialized urine and blood tests done

at the Cleveland Clinic before I come to see him.  I am having all that work

done next week and hope to have a quick appointment to see him, but I am not

holding my breath.  The MS doctor said the mito doctor really wants to see

me and he will take me earlier than the standard waiting period, but time

will tell what will actually happen.

I am a project manager and am having problems keeping up with my work.  If

this progression doesn't stop and go back at least close to where I was

before it started, I don't know how I can keep up with the level of work I

am expected to perform.

I am looking forward to being a part of this group and learning as much as I

can.

Thanks for the welcome.

Dawn S.     

------------------------------------

[Guest guest]

You know what, until I started " hanging out " with MS folks, I never knew -

other than my mother- another person will EDS... just goes to show that all

this alphabet soup goes together, I guess!

Hope you find the answers your family needs, Dawn. Prayers!

in WY

Practical Blackwork Designs

http://practicalblackwork.com

http://practical-blackwork.blogspot.com  

" You get a wonderful view from the point of no return... "

Re: We have a NEW MEMBER -- Dawn

Thanks all for the welcome.

Here's a little more info about me:

I am Dawn Schaller, a 50 year old married woman with a 13 year old

daughter.  I live in Michigan in the suburbs of Detroit. 

I have had Ehlers-Danlos Syndrome (a connective tissue disorder causing

hypermobility among other things) and various neurological issues since I

was a kid (postural orthostatic tachycardia syndrome, fainting when injured,

given injections, or having blood drawn, chronic bilateral vascular

headaches for 1.5 years straight, etc.).  My neurological problems have

gotten worse in the last four years with the last 8 months the worst long

time period and the last six weeks much worse.  I had Reyes Syndrome when I

was 15 years old after taking aspirin to bring down a fever and deal with a

headache from flu/strep throat.

In the last six weeks I have developed Raynaud's (if my feet are exposed to

slightly cool temperatures I am losing all circulation, resulting in really

cold feet and much reduced feeling in my feet); a " headache " with semi

numbness that I cannot shake that is basically from my ears down to my

shoulders, all around my head, but especially in the back of my head and

neck (I suspect CCVSI, but I have absolutely no idea what else it could be

if not that); 2.5 " diameter spots on my right heel and ball of my foot that

feel like I had local anesthesia put in and feeling is just starting to come

back; less strength in my right foot/ankle/hamstring muscle (per the doctor,

I don't notice it); I have about two minutes notice that I have to go to the

bathroom (both ways) and I have some urinary incontinence - back to wearing

a pad; burning on the bottom of my feet if they get even slightly warm

(wearing socks or shoes will bring it on); optic neuritis (just slightly

double vision that makes everything but things far away blurry, close vision

is gone except if I wear reading glasses, but even then I have to blink one

eye shut, occasional mild pain in the eyes); a feeling like I have a binder

around my ribcage making it hard to breathe; a shortness of breath and

coughing up phlem that has not been fixed by prednisone (sp?), guaifenisin

(sp?), and Advair (may be unrelated - I have a cat scan scheduled now due to

a nodule they found in my lung - probably from a previous lung infection);

executive function problems (inability to focus - adult ADD, memory

horrible, can't grasp things I normally fully understand - very scary for

me); " muscle jumping " in various muscles for about 15 seconds at a time; far

less feeling in my hands and feet; constant burning pain in my left pinky

finger and going up my hand to my wrist when I am tired or late in the day;

fatigue; and severe depression.

My family is suspected, but not yet confirmed to have a mito disorder (my

guess is MELAS, but I have been in contact with a woman whose family has all

of my family's problems and her family was the first IDed with a particular

mito defect). After having the various weird neurological, connective

tissue, and autonomic issues that have come and gone (or stayed) since my

teens, I have had new memory, executive function, pain, burning, numbness,

and other nerve problems that have popped up recently, so my doctor sent me

to a neurologist for evaluation/testing for MS. All my tests came up

positive for MS, but the doctor says that with those test results, I should

have more/different symptoms (tests were all before the exacerbation of the

last 6 weeks). My spinal tap and blood test results showed I have 8

oligoclonal bands in spinal fluid and none in blood, two small T2 lesions in

my brain MRI, and elevated IgG index.  The neurologist referred me to the

Cleveland Clinic to see an MS specialist and a mitochondrial disorder

specialist.

When I went to see the MS specialists earlier this month at the Cleveland

Clinic, they said that they believe that I have MS and transverse myelitis

based on current test results and symptoms (although I have not had an MRI

of my spine), and probably other autoimmune disorders, but they say that the

course has not been clearly relapsing-remitting or progressive, and that MS

and TM would not account for all of my symptoms.  They believe there is

something else going on and that a mitochondrial disorder is a possibility,

so they want me to see the mitochondrial specialist at the Cleveland Clinic

also.

My mom has Ehlers-Danlos Syndrome also, ADD and learning disabilities, and

was diagnosed with relapsing/remitting multiple sclerosis about 8 or 10

years ago, but her neurologist also says her MS is non-standard. My sister

has has Ehlers-Danlos Syndrome and has had optic neuritis eight times (but

not officially diagnosed with MS because she cannot have an MRI), nerve

pain, numbness, hypoglycemia, and several other neurological issues. Her son

has sensory issues, intense ADHD, and Asperger's Syndrome. Her daughter has

Ehler-Danlos Syndrome and severe allergies/asthma. My brother has had drug

resistant depression since he was in elementary school, optic neuritis

(tested for MS, but can't have an MRI and other testing was inconclusive),

lots of nerve issues, ADD, and small fiber neuropathy. I suspect he has

Asperger's syndrome also, but has not been diagnosed. My aunt had ADD and

learning disabilities, and has had hypoglycemia her entire life. She has

five daughters, a son, and 10 grandchildren from her daughters. Most of her

children and grandchildren (even the kids) have ADD and drug resistant

depression. Her son has POTS. Three daughter have chronic pain syndromes

that won't clear. One daughter has Scleroderma, Raynaud's, and Sjogrens.

That daughter's 22 year old daughter has Lupus Nephritis and her son has

Asperger's Syndrome. Two of my mother's male cousins also had MS (since

deceased). One of my grandmother's sisters died from hydrocephalus at age 5

years and a brother died from meningitis at about the same age.

My 13 year old daughter has had multiple chronic health issues since she was

born.  She also has Ehlers-Danlos Syndrome and still has sensory issues,

ADD, nonverbal learning disability, postural orthostatic tachycardia

syndrome (POTS - pulse goes from 48 laying down to 155 standing up and her

BP is also affected), kidney problems, hormonal issues, and hypoglycemia.

She has had severe health deterioration since she entered puberty 10 months

ago - depression; wild mood swings; uncontrolled anger; anxiety; need for 10

- 12 hours of sleep per day; her hormones are all messed up because her

periods have gone from 3 28 day " normal " cycles, to 8 days of basically

hemorrhaging (unable to go to school), followed by 3 days of spotting, to 24

days of spotting after a 60 day cycle; inability to focus; grades dropped

two grade levels.  A year before all that started last July, she developed

gross hematuria from her kidneys without protein when she was really active,

which seems to have calmed down (but not gone away). She also had a mildly

positive ANA test result that the kidney doctor said wasn't anything to

worry about 18 months ago. She has now developed intermittent microhematuria

still without protein, so her kidney specialist is not tremendously

concerned. He could do a kidney biopsy, but he said that is tremendously

invasive, painful, and expensive, so he is not inclined to push it unless

things get much worse in the kidney arena or we demand it.

The mito doctor wants to see me, but he wants a neuro-opthomologist and

neuro-psych evaluations and some very specialized urine and blood tests done

at the Cleveland Clinic before I come to see him.  I am having all that work

done next week and hope to have a quick appointment to see him, but I am not

holding my breath.  The MS doctor said the mito doctor really wants to see

me and he will take me earlier than the standard waiting period, but time

will tell what will actually happen.

I am a project manager and am having problems keeping up with my work.  If

this progression doesn't stop and go back at least close to where I was

before it started, I don't know how I can keep up with the level of work I

am expected to perform.

I am looking forward to being a part of this group and learning as much as I

can.

Thanks for the welcome.

Dawn S.     

------------------------------------

[Guest guest]

You know what, until I started " hanging out " with MS folks, I never knew -

other than my mother- another person will EDS... just goes to show that all

this alphabet soup goes together, I guess!

Hope you find the answers your family needs, Dawn. Prayers!

in WY

Practical Blackwork Designs

http://practicalblackwork.com

http://practical-blackwork.blogspot.com  

" You get a wonderful view from the point of no return... "

Re: We have a NEW MEMBER -- Dawn

Thanks all for the welcome.

Here's a little more info about me:

I am Dawn Schaller, a 50 year old married woman with a 13 year old

daughter.  I live in Michigan in the suburbs of Detroit. 

I have had Ehlers-Danlos Syndrome (a connective tissue disorder causing

hypermobility among other things) and various neurological issues since I

was a kid (postural orthostatic tachycardia syndrome, fainting when injured,

given injections, or having blood drawn, chronic bilateral vascular

headaches for 1.5 years straight, etc.).  My neurological problems have

gotten worse in the last four years with the last 8 months the worst long

time period and the last six weeks much worse.  I had Reyes Syndrome when I

was 15 years old after taking aspirin to bring down a fever and deal with a

headache from flu/strep throat.

In the last six weeks I have developed Raynaud's (if my feet are exposed to

slightly cool temperatures I am losing all circulation, resulting in really

cold feet and much reduced feeling in my feet); a " headache " with semi

numbness that I cannot shake that is basically from my ears down to my

shoulders, all around my head, but especially in the back of my head and

neck (I suspect CCVSI, but I have absolutely no idea what else it could be

if not that); 2.5 " diameter spots on my right heel and ball of my foot that

feel like I had local anesthesia put in and feeling is just starting to come

back; less strength in my right foot/ankle/hamstring muscle (per the doctor,

I don't notice it); I have about two minutes notice that I have to go to the

bathroom (both ways) and I have some urinary incontinence - back to wearing

a pad; burning on the bottom of my feet if they get even slightly warm

(wearing socks or shoes will bring it on); optic neuritis (just slightly

double vision that makes everything but things far away blurry, close vision

is gone except if I wear reading glasses, but even then I have to blink one

eye shut, occasional mild pain in the eyes); a feeling like I have a binder

around my ribcage making it hard to breathe; a shortness of breath and

coughing up phlem that has not been fixed by prednisone (sp?), guaifenisin

(sp?), and Advair (may be unrelated - I have a cat scan scheduled now due to

a nodule they found in my lung - probably from a previous lung infection);

executive function problems (inability to focus - adult ADD, memory

horrible, can't grasp things I normally fully understand - very scary for

me); " muscle jumping " in various muscles for about 15 seconds at a time; far

less feeling in my hands and feet; constant burning pain in my left pinky

finger and going up my hand to my wrist when I am tired or late in the day;

fatigue; and severe depression.

My family is suspected, but not yet confirmed to have a mito disorder (my

guess is MELAS, but I have been in contact with a woman whose family has all

of my family's problems and her family was the first IDed with a particular

mito defect). After having the various weird neurological, connective

tissue, and autonomic issues that have come and gone (or stayed) since my

teens, I have had new memory, executive function, pain, burning, numbness,

and other nerve problems that have popped up recently, so my doctor sent me

to a neurologist for evaluation/testing for MS. All my tests came up

positive for MS, but the doctor says that with those test results, I should

have more/different symptoms (tests were all before the exacerbation of the

last 6 weeks). My spinal tap and blood test results showed I have 8

oligoclonal bands in spinal fluid and none in blood, two small T2 lesions in

my brain MRI, and elevated IgG index.  The neurologist referred me to the

Cleveland Clinic to see an MS specialist and a mitochondrial disorder

specialist.

When I went to see the MS specialists earlier this month at the Cleveland

Clinic, they said that they believe that I have MS and transverse myelitis

based on current test results and symptoms (although I have not had an MRI

of my spine), and probably other autoimmune disorders, but they say that the

course has not been clearly relapsing-remitting or progressive, and that MS

and TM would not account for all of my symptoms.  They believe there is

something else going on and that a mitochondrial disorder is a possibility,

so they want me to see the mitochondrial specialist at the Cleveland Clinic

also.

My mom has Ehlers-Danlos Syndrome also, ADD and learning disabilities, and

was diagnosed with relapsing/remitting multiple sclerosis about 8 or 10

years ago, but her neurologist also says her MS is non-standard. My sister

has has Ehlers-Danlos Syndrome and has had optic neuritis eight times (but

not officially diagnosed with MS because she cannot have an MRI), nerve

pain, numbness, hypoglycemia, and several other neurological issues. Her son

has sensory issues, intense ADHD, and Asperger's Syndrome. Her daughter has

Ehler-Danlos Syndrome and severe allergies/asthma. My brother has had drug

resistant depression since he was in elementary school, optic neuritis

(tested for MS, but can't have an MRI and other testing was inconclusive),

lots of nerve issues, ADD, and small fiber neuropathy. I suspect he has

Asperger's syndrome also, but has not been diagnosed. My aunt had ADD and

learning disabilities, and has had hypoglycemia her entire life. She has

five daughters, a son, and 10 grandchildren from her daughters. Most of her

children and grandchildren (even the kids) have ADD and drug resistant

depression. Her son has POTS. Three daughter have chronic pain syndromes

that won't clear. One daughter has Scleroderma, Raynaud's, and Sjogrens.

That daughter's 22 year old daughter has Lupus Nephritis and her son has

Asperger's Syndrome. Two of my mother's male cousins also had MS (since

deceased). One of my grandmother's sisters died from hydrocephalus at age 5

years and a brother died from meningitis at about the same age.

My 13 year old daughter has had multiple chronic health issues since she was

born.  She also has Ehlers-Danlos Syndrome and still has sensory issues,

ADD, nonverbal learning disability, postural orthostatic tachycardia

syndrome (POTS - pulse goes from 48 laying down to 155 standing up and her

BP is also affected), kidney problems, hormonal issues, and hypoglycemia.

She has had severe health deterioration since she entered puberty 10 months

ago - depression; wild mood swings; uncontrolled anger; anxiety; need for 10

- 12 hours of sleep per day; her hormones are all messed up because her

periods have gone from 3 28 day " normal " cycles, to 8 days of basically

hemorrhaging (unable to go to school), followed by 3 days of spotting, to 24

days of spotting after a 60 day cycle; inability to focus; grades dropped

two grade levels.  A year before all that started last July, she developed

gross hematuria from her kidneys without protein when she was really active,

which seems to have calmed down (but not gone away). She also had a mildly

positive ANA test result that the kidney doctor said wasn't anything to

worry about 18 months ago. She has now developed intermittent microhematuria

still without protein, so her kidney specialist is not tremendously

concerned. He could do a kidney biopsy, but he said that is tremendously

invasive, painful, and expensive, so he is not inclined to push it unless

things get much worse in the kidney arena or we demand it.

The mito doctor wants to see me, but he wants a neuro-opthomologist and

neuro-psych evaluations and some very specialized urine and blood tests done

at the Cleveland Clinic before I come to see him.  I am having all that work

done next week and hope to have a quick appointment to see him, but I am not

holding my breath.  The MS doctor said the mito doctor really wants to see

me and he will take me earlier than the standard waiting period, but time

will tell what will actually happen.

I am a project manager and am having problems keeping up with my work.  If

this progression doesn't stop and go back at least close to where I was

before it started, I don't know how I can keep up with the level of work I

am expected to perform.

I am looking forward to being a part of this group and learning as much as I

can.

Thanks for the welcome.

Dawn S.     

------------------------------------

[Guest guest]

Cait,

My vascular specialist said that he will be heading up a study at

Beaumont Hospital in Royal Oak, Michigan some time in the future and he said I

might be a candidate. Currently, no insurance company he is aware of will cover

the possible tests to see if you have a vascular problem in that area much less

the CCVSI " release " procedure.

My mom was 40 when she had her first episode of optic neuritis and was diagnosed

when she was 63 or 65. The MS specialst at the Cleveland Clinic is saying my MS

started 4 years ago when I first started getting the " burning feet " issues, so

that would have made me 46 at that time. My sister started getting optic

neuritis areound age 40. My brother has had his issues since around age 40

also.

Neither my brother nor sister have been officially diagnosed due to not being

able to have MRIs and are not undergoing any treatment as a result. They both

take 4 - 6 k IUs of Vitamin D-3 at my mom's insistence and started regular

intense physical exercise. They have not had issues since. I am not certain if

they would have followed the same course without the exercise and Vit D-3. My

mom's MS was really bad about 3 years ago and she was using a walker or a cane.

She was on her MS meds at that time and still is on the same meds. The only

thing she changed was that she started using high doses of Vit D-3 and she walks

without assistance now...

I am hoping the nodule in my lung is just scar tissue. I had a really bad case

of alveolitis after a sinus infection turned into bronchitis and I coughed for

three months before seeking treatment (soooo dumb). The doctors office said I

had a previous x-ray in November of 09 and it showed the same image. I have

never smoked, so I don't expect it would be lung cancer.

Dawn S.

>

> I'm so sorry about all the illnesses you and your family have. My mother had

several connective tissue illnesses, Raynaud's, and a very painful eye

inflammation. Years ago the Mayo clinic put her on all those darn TB pills not

because she had active TB but because she tested positive and had obviously been

in contact with it at some point.

>

> She was on prednisone for over 30 years and in constant pain. When her

eyesight went and she had to give up her art and crafts, she died soon after.

I do hope they find some way to help you. I can't sweat either and my feet are

purple all the time and always have been.

>

> Are you considering CCSVI and angioplasty? I really wish they would do it in

Canada .... hugs, Cait

[Guest guest]

Thanks ,

I have heard that connective tissue issues can be linked to MS, but specifically

EDS.

Dawn S.

>

> You know what, until I started " hanging out " with MS folks, I never knew -

> other than my mother- another person will EDS... just goes to show that all

> this alphabet soup goes together, I guess!

>

> Hope you find the answers your family needs, Dawn. Prayers!

>

>

>

> in WY

> Practical Blackwork Designs

> http://practicalblackwork.com

> http://practical-blackwork.blogspot.com