Re: more questios...

May 27, 2005

Hi a, I'm no doctor, but have you ever been tested for Lupus or

any other joint disease ? Mitochondrial disease is usually a diagnosis

that people get when more common diseases have been explored without

success. You certainly sound like you have a Rheumatic disease. Have

you seen a Rheumatologist ? If not, I would highly recommend it.

Rheumatic disease could explain all of your symptoms. Muscle,

Gastrointestinal, and Neurological problems are common with a variety

of disorders, so you have to explore the more logical ones before

suspecting Mito. I hope you find the help that you need. And if it

turns out to be Mito, welcome to the family !

bug

May 27, 2005

Kistina

Never hesitate to ask questions. We all learn from the responses of

others. It won't be long before you are helping someone else out with

information. You can always give support to others - it doesn't have

to be information.

My symptoms come and go and return. The more I try to do or if under

emotional stress, the more symptoms I have. If I go without my

supplements, then I have more symptoms.

The swelling could be autonomic which is very common with mito. Is it

worse in the morning? I have this. One thing you can do to determine

if it is water retention is to weigh yourself every morning and see if

your weight increases when the swelling is bad and down when it isn't.

I have swelling at the thumb/wrist

junction which is arthritis and wear a splint when necessary,

espestically if doing any lifting or repeative movements.

As far as dropping things, I have this problem as well. For me, it is

due to myoclonus. My small muscles jerk and then I drop things. I take

Lamictal (anti-convulsant) which calms the nerves that cause this, but

it still happens for periods of time. I have learned to automatically

place the object and my hand against my body. This seems to help.

The problem with getting up is one I have. I try to sit on higher

chairs, which makes getting up easier, but I also go through periods

that this is worse. Before I got my hospital bed, I had a cord

fastened to a door with the other end pinned to the mattress. When I

wanted to get up, I unpinned it and used the cord to help me up.

The word thing is also common. I really have problems when typing. I

type the letter with the wrong hand, but same postition. It sure makes

for some strange words. I also have word finding problems.

You might want to ask your doctor about starting some of the mito

cocktail, unless you are scheduled for a muscle biopsy. Usually people

start with CoQ 10 and Carnitor.

Keep asking those questions.

laurie

>

> Hello to all,

>

> I am undiagnosed, but my regular PCP is considering mito with me. I

> feel like I have little to offer the group at this time due to my

> limited knowledge, but wondered if I could ask yet another round of

> questions.

>

> My symptoms started a year ago last April, so I haven't been dealing

> with them long. They seem to come and go. One of my initial

> symptoms was incoordination/balance issues. It was terrible for

> about six months and then seemed to go away until just recently.

>

> I have noticed that I am again having trouble maintaing my balance,

> and am having difficulty again with getting up from setting positions-

> I start to stand up and only get about 3 inches up, but then its

> like the message doesn't get to my legs fast enough, or the muscle

> just don't work and I end up back in a setting position.

>

> I am also having a terrible time with dropping things. I can't seem

> to hold onto anything for the life of me.

>

> I saw my doctor recently because the area just below my right wrist

> is swollen and it hurts to move it. He said he believes its due to a

> muscle issue, but isn't sure. He said its a weird place to see

> swelling and I have had to wear a wrist brace for the last 3 weeks.

>

> I guess my questions are, with any kind of mito disease, can symptoms

> come and go, and can swelling of body parts be an issue? My ankles

> and knees also swell each day. I have also been waking up in the

> middle of the night to eat, and I really don't understand it. It

> almost feels like an animal instinct. Does anyone else have to do

> this?

>

> Most days I just deal with fatigue, muscle spasms,vision issues and

> sensory problems. I seem to go through cycles of gastrointestinal

> problems, and at times seem to cycle through other types of symptoms

> as well. I have also recently started having problems with misuse of

> words when I write and speak which was another initial symptom I

> started with that seems to wax and wane.

>

> I'm just really frustrated because I don't understand what is

> happening to my body. I don't seem to be any worse than I was at

> this time last year, but I'm not any better either. I also have days

> of debilitating fatigue and I wake up everday in a lot of pain that

> last several hours each morning, and then I am usually pain free a

> couple hours but I end up going to bed hurting each night as well.

>

> Any thoughts or suggestions? I am on an anti-inflammatory and

> sleeping medication.

>

> Thanks,

> a

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

May 27, 2005

Hi a, You've had good responses from others, but just wanted to add

one thought. I presume MS has been ruled out, given all the balance

problems, dropping things etc? These symptoms would be very typical of MS,

as would the " remission. " Fatigue, pain is also common in MS. I agree with

bug that the more common disorders are usually ruled out before mito is

considered, and that the swelling would certainly warrant a work-up with

rheumatology. Unfortunately, there are a number of different disorders that

can cause these symptoms, and sometimes it takes time before the patterns

become clear and point in the right direction. Meanwhile, I hope you have

found good medical help. Did your doctors follow up on any of the names I

provided? I do know a good rheumatologist at KUMC. He has taken care of me

since 1983.

Take care,

Barbara

_____

From: [mailto: ] On Behalf

Of onefulloffaith

Sent: Thursday, May 26, 2005 11:31 PM

To:

Subject: more questios...

Hello to all,

I am undiagnosed, but my regular PCP is considering mito with me. I

feel like I have little to offer the group at this time due to my

limited knowledge, but wondered if I could ask yet another round of

questions.

My symptoms started a year ago last April, so I haven't been dealing

with them long. They seem to come and go. One of my initial

symptoms was incoordination/balance issues. It was terrible for

about six months and then seemed to go away until just recently.

I have noticed that I am again having trouble maintaing my balance,

and am having difficulty again with getting up from setting positions-

I start to stand up and only get about 3 inches up, but then its

like the message doesn't get to my legs fast enough, or the muscle

just don't work and I end up back in a setting position.

I am also having a terrible time with dropping things. I can't seem

to hold onto anything for the life of me.

I saw my doctor recently because the area just below my right wrist

is swollen and it hurts to move it. He said he believes its due to a

muscle issue, but isn't sure. He said its a weird place to see

swelling and I have had to wear a wrist brace for the last 3 weeks.

I guess my questions are, with any kind of mito disease, can symptoms

come and go, and can swelling of body parts be an issue? My ankles

and knees also swell each day. I have also been waking up in the

middle of the night to eat, and I really don't understand it. It

almost feels like an animal instinct. Does anyone else have to do

this?

Most days I just deal with fatigue, muscle spasms,vision issues and

sensory problems. I seem to go through cycles of gastrointestinal

problems, and at times seem to cycle through other types of symptoms

as well. I have also recently started having problems with misuse of

words when I write and speak which was another initial symptom I

started with that seems to wax and wane.

I'm just really frustrated because I don't understand what is

happening to my body. I don't seem to be any worse than I was at

this time last year, but I'm not any better either. I also have days

of debilitating fatigue and I wake up everday in a lot of pain that

last several hours each morning, and then I am usually pain free a

couple hours but I end up going to bed hurting each night as well.

Any thoughts or suggestions? I am on an anti-inflammatory and

sleeping medication.

Thanks,

a

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with

their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

_____

May 27, 2005

Hi Bug,

Yes I have been tested for lupus, arthritis, fibro, chronic fatigue,

MS, neurologic syphillis, B12, thyroid, diabetes, the list goes on.

I have optic atrophy/internuclear opthalmoplegia, afferent pupillary

defect and optic disc pallor, and my eyes no longer secrete enough

tears. My CPK has been tested, etc. The only thing they have found is

a positive test for IgG antibodies on a cross-reactivity test for west

nile virus, and I have been told by my pcp, an ms specialist, and a

rhuemotologist that none of my symptoms are related to the positive

west nile. My doctor is stabbing in the dark at this point. He tells

me he feels there is definatley something wrong, but doesn't know what

and doesn't know where to start which is why he is considering

mitochondrial issues.

Thanks for your response and thoughts!

> Hi a, I'm no doctor, but have you ever been tested for Lupus

or

> any other joint disease ? Mitochondrial disease is usually a

diagnosis

> that people get when more common diseases have been explored without

> success. You certainly sound like you have a Rheumatic disease.

Have

> you seen a Rheumatologist ? If not, I would highly recommend it.

> Rheumatic disease could explain all of your symptoms. Muscle,

> Gastrointestinal, and Neurological problems are common with a variety

> of disorders, so you have to explore the more logical ones before

> suspecting Mito. I hope you find the help that you need. And if it

> turns out to be Mito, welcome to the family !

>

> bug

May 27, 2005

Hi Barbara,

I have been tested for MS ( I have had 2 normal brain MRI's, a normal

spine MRI and a normal LP). I have heard its possible to have

lesions small enough to cause symptoms but not show up on MRI's. My

doctor has agreed to do MRI's at least every six months until we

figure out what my problem is. I saw a rheumatologist in March who

felt that my symptoms were more neurologic in nature and not related

to his field.

My doctor did follow up on doctors you suggested (Thank you so

much!). He requested a specific neurologist at KU (not sure who) and

KU changed it a Dr. Barohn (a neurologist) when they learned

he was referring for possible mito issues. I see him on July 26th.

I see a local neurologist that specializes in MS on June 20th.

Hopefully one or the other will have some ideas.

I guess I need to start journaling my daily symptoms again to see if

there is a pattern. I was doing it on a regular basis until my old

pcp and the first neuro I saw listed in my medical records that I

was " anxious " due to my note taking/symptom list.

I hate that anyone else has these problems, but I'm glad to hear I am

not alone. I just get so frustrated sometimes!

I just bought a scale a couple weeks ago (trying to lose some weight)

so I will take your advice and see if I am having issue with water

retention.

Thanks again, I hope this finds you well!

a

> Hi a, You've had good responses from others, but just wanted

to add

> one thought. I presume MS has been ruled out, given all the balance

> problems, dropping things etc? These symptoms would be very typical

of MS,

> as would the " remission. " Fatigue, pain is also common in MS. I

agree with

> bug that the more common disorders are usually ruled out before

mito is

> considered, and that the swelling would certainly warrant a work-up

with

> rheumatology. Unfortunately, there are a number of different

disorders that

> can cause these symptoms, and sometimes it takes time before the

patterns

> become clear and point in the right direction. Meanwhile, I hope

you have

> found good medical help. Did your doctors follow up on any of the

names I

> provided? I do know a good rheumatologist at KUMC. He has taken

care of me

> since 1983.

>

> Take care,

>

> Barbara

>

> _____

>

> From: [mailto: ]

On Behalf

> Of onefulloffaith

> Sent: Thursday, May 26, 2005 11:31 PM

> To:

> Subject: more questios...

>

> Hello to all,

>

> I am undiagnosed, but my regular PCP is considering mito with me.

I

> feel like I have little to offer the group at this time due to my

> limited knowledge, but wondered if I could ask yet another round of

> questions.

>

> My symptoms started a year ago last April, so I haven't been

dealing

> with them long. They seem to come and go. One of my initial

> symptoms was incoordination/balance issues. It was terrible for

> about six months and then seemed to go away until just recently.

>

> I have noticed that I am again having trouble maintaing my balance,

> and am having difficulty again with getting up from setting

positions-

> I start to stand up and only get about 3 inches up, but then its

> like the message doesn't get to my legs fast enough, or the muscle

> just don't work and I end up back in a setting position.

>

> I am also having a terrible time with dropping things. I can't

seem

> to hold onto anything for the life of me.

>

> I saw my doctor recently because the area just below my right wrist

> is swollen and it hurts to move it. He said he believes its due to

a

> muscle issue, but isn't sure. He said its a weird place to see

> swelling and I have had to wear a wrist brace for the last 3 weeks.

>

> I guess my questions are, with any kind of mito disease, can

symptoms

> come and go, and can swelling of body parts be an issue? My ankles

> and knees also swell each day. I have also been waking up in the

> middle of the night to eat, and I really don't understand it. It

> almost feels like an animal instinct. Does anyone else have to do

> this?

>

> Most days I just deal with fatigue, muscle spasms,vision issues and

> sensory problems. I seem to go through cycles of gastrointestinal

> problems, and at times seem to cycle through other types of

symptoms

> as well. I have also recently started having problems with misuse

of

> words when I write and speak which was another initial symptom I

> started with that seems to wax and wane.

>

> I'm just really frustrated because I don't understand what is

> happening to my body. I don't seem to be any worse than I was at

> this time last year, but I'm not any better either. I also have

days

> of debilitating fatigue and I wake up everday in a lot of pain that

> last several hours each morning, and then I am usually pain free a

> couple hours but I end up going to bed hurting each night as well.

>

> Any thoughts or suggestions? I am on an anti-inflammatory and

> sleeping medication.

>

> Thanks,

> a

>

> Medical advice, information, opinions, data and statements

contained herein

> are not necessarily those of the list moderators. The author of

this e mail

> is entirely responsible for its content. List members are reminded

of their

> responsibility to evaluate the content of the postings and consult

with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

one is

> automatically moderated or removed depending on the severity of the

attack.

>

> _____

>

May 27, 2005

Hi Laurie,

Thanks for your support! I think I got your post and Barbara's post

mixed up. So much for trying to multi-task. I can't keep anything

straight anymore!

I was telling Barbara that I just purchased a scale a couple weeks

ago, so I will take your advice and see about the water retention

issue.

I hate that anyone else has symptoms like these to deal with, but

glad I am not alone. With your myclonus, do you always feel the jerk

as you drop something? I have had some myclonic activity mostly in

my legs but occasionaly my hands will jerk about but I haven't

noticed it occuring when I drop things. After plunging a toilet

about a month ago, I noticed I began having muscle spasms in my upper

right wrist just above where the swelling and pain are. These have

continued off and on since I plunged the toilet. Never had them in

that area of my arm before I did that. I asked my PCP if he thought

that had anything to do with it, but he wasn't sure. he said it was

possible since he felt the issue with my wrist is a muscle issue.

I just get frustrated that something so simple as plunging a toilet

could cause me problems a month later.

Thanks for your answers and supoprt!

a

> >

> > Hello to all,

> >

> > I am undiagnosed, but my regular PCP is considering mito with

me. I

> > feel like I have little to offer the group at this time due to my

> > limited knowledge, but wondered if I could ask yet another round

of

> > questions.

> >

> > My symptoms started a year ago last April, so I haven't been

dealing

> > with them long. They seem to come and go. One of my initial

> > symptoms was incoordination/balance issues. It was terrible for

> > about six months and then seemed to go away until just recently.

> >

> > I have noticed that I am again having trouble maintaing my

balance,

> > and am having difficulty again with getting up from setting

positions-

> > I start to stand up and only get about 3 inches up, but then its

> > like the message doesn't get to my legs fast enough, or the

muscle

> > just don't work and I end up back in a setting position.

> >

> > I am also having a terrible time with dropping things. I can't

seem

> > to hold onto anything for the life of me.

> >

> > I saw my doctor recently because the area just below my right

wrist

> > is swollen and it hurts to move it. He said he believes its due

to a

> > muscle issue, but isn't sure. He said its a weird place to see

> > swelling and I have had to wear a wrist brace for the last 3

weeks.

> >

> > I guess my questions are, with any kind of mito disease, can

symptoms

> > come and go, and can swelling of body parts be an issue? My

ankles

> > and knees also swell each day. I have also been waking up in the

> > middle of the night to eat, and I really don't understand it. It

> > almost feels like an animal instinct. Does anyone else have to

do

> > this?

> >

> > Most days I just deal with fatigue, muscle spasms,vision issues

and

> > sensory problems. I seem to go through cycles of gastrointestinal

> > problems, and at times seem to cycle through other types of

symptoms

> > as well. I have also recently started having problems with

misuse of

> > words when I write and speak which was another initial symptom I

> > started with that seems to wax and wane.

> >

> > I'm just really frustrated because I don't understand what is

> > happening to my body. I don't seem to be any worse than I was at

> > this time last year, but I'm not any better either. I also have

days

> > of debilitating fatigue and I wake up everday in a lot of pain

that

> > last several hours each morning, and then I am usually pain free

a

> > couple hours but I end up going to bed hurting each night as well.

> >

> > Any thoughts or suggestions? I am on an anti-inflammatory and

> > sleeping medication.

> >

> > Thanks,

> > a

> >

> > Medical advice, information, opinions, data and statements

contained herein

> > are not necessarily those of the list moderators. The author of

this e mail

> > is entirely responsible for its content. List members are

reminded of their

> > responsibility to evaluate the content of the postings and

consult with

> > their physicians regarding changes in their own treatment.

> >

> > Personal attacks are not permitted on the list and anyone who

sends one is

> > automatically moderated or removed depending on the severity of

the attack.

> >

May 27, 2005

There may be multiple tests for the same condition, so one negative

test may not rule out future positive results or positive results on

a different test for the same disorder.

Have you had C Reactive Protein (CRP) tested, or erythrocyte

sedimentation rate (ESR)? These are general markers for inflammation

and infection, and can be positive if a unknown but systemic

condition is going on.

Are they at least offering some treatment for your symptoms?

Take care,

RH

> > Hi a, I'm no doctor, but have you ever been tested for

Lupus

> or

> > any other joint disease ? Mitochondrial disease is usually a

> diagnosis

> > that people get when more common diseases have been explored

without

> > success. You certainly sound like you have a Rheumatic disease.

> Have

> > you seen a Rheumatologist ? If not, I would highly recommend

it.

> > Rheumatic disease could explain all of your symptoms. Muscle,

> > Gastrointestinal, and Neurological problems are common with a

variety

> > of disorders, so you have to explore the more logical ones before

> > suspecting Mito. I hope you find the help that you need. And if

it

> > turns out to be Mito, welcome to the family !

> >

> > bug

May 27, 2005

My doctor tested my sed rate after seeing me for the wrist issue and

it was normal, and he started I guess what's refered to as tier 1

testing? He checked acetone which is negative, CPK was at 58 with

the reference range 22-269, lactic acid was 1.0 with range 0-2.2 and,

ammonia was 19 range 10-35. I think my carnitine was a send out lab

and i believe it was normal as well. My ANA was tested last year and

was also normal.

He thinks I have muscle issues and something inflammatory going on

(due to the swelling), but we have no lab evidence of it because

everything keeps coming back normal.

I was initially on 900 mg of neurontin, amitriptyline, and

amantadine. My doctor wanted to make sure none of my symptos were

related to medication, so those were stopped in January and since I

didn't improve or get worse after stopping them he decided to go with

50 mg of Diclofenac 2x daily and 100mg of Seroquel to help me sleep.

I need to visit with him about the Diclofenac as my pain level has

increased over the last couple of weeks and I have been taking twice

the prescribed amount due to pain.

I don't think I have had a CRP test, I'll ask the doctor about that.

I have had a comp metabolic profile, and CBC with Autodiff. Those

just showed that I am slightly malnourished, although you wouldn't

guess it by looking at me.

Thanks again for your thoughts, I sure appreciate anything anyone can

come up with!

> > > Hi a, I'm no doctor, but have you ever been tested for

> Lupus

> > or

> > > any other joint disease ? Mitochondrial disease is usually a

> > diagnosis

> > > that people get when more common diseases have been explored

> without

> > > success. You certainly sound like you have a Rheumatic

disease.

> > Have

> > > you seen a Rheumatologist ? If not, I would highly recommend

> it.

> > > Rheumatic disease could explain all of your symptoms. Muscle,

> > > Gastrointestinal, and Neurological problems are common with a

> variety

> > > of disorders, so you have to explore the more logical ones

before

> > > suspecting Mito. I hope you find the help that you need. And

if

> it

> > > turns out to be Mito, welcome to the family !

> > >

> > > bug

May 28, 2005

a, Dr. Barohn is chief of neurology at KUMC, so they sent you to the

head cheese. I have not seen him, but I know other patients who have. I hope

it goes well and that the local neurologist will also be helpful. It does

sound like your PCP is trying hard to help and that is a great blessing.

BTW, the CRP is more sensitive than sed rate for inflammation, so it's worth

checking when inflammation is suspected. It can be positive when sed rate is

neg and has been for me.

Take care,

Barbara

_____

From: [mailto: ] On Behalf

Of onefulloffaith

Sent: Friday, May 27, 2005 4:12 PM

To:

Subject: Re: more questios...

Hi Barbara,

I have been tested for MS ( I have had 2 normal brain MRI's, a normal

spine MRI and a normal LP). I have heard its possible to have

lesions small enough to cause symptoms but not show up on MRI's. My

doctor has agreed to do MRI's at least every six months until we

figure out what my problem is. I saw a rheumatologist in March who

felt that my symptoms were more neurologic in nature and not related

to his field.

My doctor did follow up on doctors you suggested (Thank you so

much!). He requested a specific neurologist at KU (not sure who) and

KU changed it a Dr. Barohn (a neurologist) when they learned

he was referring for possible mito issues. I see him on July 26th.

I see a local neurologist that specializes in MS on June 20th.

Hopefully one or the other will have some ideas.

I guess I need to start journaling my daily symptoms again to see if

there is a pattern. I was doing it on a regular basis until my old

pcp and the first neuro I saw listed in my medical records that I

was " anxious " due to my note taking/symptom list.

I hate that anyone else has these problems, but I'm glad to hear I am

not alone. I just get so frustrated sometimes!

I just bought a scale a couple weeks ago (trying to lose some weight)

so I will take your advice and see if I am having issue with water

retention.

Thanks again, I hope this finds you well!

a

> Hi a, You've had good responses from others, but just wanted

to add

> one thought. I presume MS has been ruled out, given all the balance

> problems, dropping things etc? These symptoms would be very typical

of MS,

> as would the " remission. " Fatigue, pain is also common in MS. I

agree with

> bug that the more common disorders are usually ruled out before

mito is

> considered, and that the swelling would certainly warrant a work-up

with

> rheumatology. Unfortunately, there are a number of different

disorders that

> can cause these symptoms, and sometimes it takes time before the

patterns

> become clear and point in the right direction. Meanwhile, I hope

you have

> found good medical help. Did your doctors follow up on any of the

names I

> provided? I do know a good rheumatologist at KUMC. He has taken

care of me

> since 1983.

>

> Take care,

>

> Barbara

>

> _____

>

> From: [mailto: ]

On Behalf

> Of onefulloffaith

> Sent: Thursday, May 26, 2005 11:31 PM

> To:

> Subject: more questios...

>

> Hello to all,

>

> I am undiagnosed, but my regular PCP is considering mito with me.

I

> feel like I have little to offer the group at this time due to my

> limited knowledge, but wondered if I could ask yet another round of

> questions.

>

> My symptoms started a year ago last April, so I haven't been

dealing

> with them long. They seem to come and go. One of my initial

> symptoms was incoordination/balance issues. It was terrible for

> about six months and then seemed to go away until just recently.

>

> I have noticed that I am again having trouble maintaing my balance,

> and am having difficulty again with getting up from setting

positions-

> I start to stand up and only get about 3 inches up, but then its

> like the message doesn't get to my legs fast enough, or the muscle

> just don't work and I end up back in a setting position.

>

> I am also having a terrible time with dropping things. I can't

seem

> to hold onto anything for the life of me.

>

> I saw my doctor recently because the area just below my right wrist

> is swollen and it hurts to move it. He said he believes its due to

a

> muscle issue, but isn't sure. He said its a weird place to see

> swelling and I have had to wear a wrist brace for the last 3 weeks.

>

> I guess my questions are, with any kind of mito disease, can

symptoms

> come and go, and can swelling of body parts be an issue? My ankles

> and knees also swell each day. I have also been waking up in the

> middle of the night to eat, and I really don't understand it. It

> almost feels like an animal instinct. Does anyone else have to do

> this?

>

> Most days I just deal with fatigue, muscle spasms,vision issues and

> sensory problems. I seem to go through cycles of gastrointestinal

> problems, and at times seem to cycle through other types of

symptoms

> as well. I have also recently started having problems with misuse

of

> words when I write and speak which was another initial symptom I

> started with that seems to wax and wane.

>

> I'm just really frustrated because I don't understand what is

> happening to my body. I don't seem to be any worse than I was at

> this time last year, but I'm not any better either. I also have

days

> of debilitating fatigue and I wake up everday in a lot of pain that

> last several hours each morning, and then I am usually pain free a

> couple hours but I end up going to bed hurting each night as well.

>

> Any thoughts or suggestions? I am on an anti-inflammatory and

> sleeping medication.

>

> Thanks,

> a

>

> Medical advice, information, opinions, data and statements

contained herein

> are not necessarily those of the list moderators. The author of

this e mail

> is entirely responsible for its content. List members are reminded

of their

> responsibility to evaluate the content of the postings and consult

with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

one is

> automatically moderated or removed depending on the severity of the

attack.

>

> _____

>

May 28, 2005

Hi, a

I am sorry you are having such problems. You have received many good

thought here from others. I just have one small bit of experience to

share with you. This concerns the plunging. For years I had

debilitating pain/swelling in various parts of my body that were

attributed to rheumatoid arthritis. (My rheumatoid count is high).

Yet the symptoms never matched what I read about about RA. After many

years, much reflection, and another doctor we have come to the

conclusion that many of my pains were " self inflicted " -

muscle/ligament straining/inflamation, when I tried to do " normal "

things that my deteriorating muslces were not able to do anymore. I

must admit I am stubborn, and pushed myself a lot to get things done.

Anyway, these problems have lessened a lot since I have learned to

respect my limits more and learned proper body mechanics. The limits

means resting a lot in between doing physical things, and not pushing,

or doing too much at once. The body mechanics were learned/changed by

me by observing what muscles/tendons were in pain, and thinking what I

had done the previous day that was different. (It always takes many

hours to show up - never immediate.) Added to that, 2 years of

learning about muscles by experimenting, trial and error, in the gym

now lets me be somewhat active, using proper movements, with

considerably fewer debilitating flair ups. I do not use pain meds, btw,

because I am afraid then I will not know when I am overdoing it.

I would definitely explore connections between what you make your body

do and pains/aches. For me, resting is not the solution, btw, but very

frequent but always careful movement, staying within the limits of what

I can do that day. Use it or lose it applies to me totally.

Of course other things like supplements and dietary modification has

also helped me, I believe, and I can't sort it out completely.

Shees...I can never say anything quickly. I guess I give the detail

because I think the complete picture is necessary to understand what we

are dealing with. Our commonality is that we have unusual body

experiences, at least in part muscle related, yet our experiences are

also so varied and unique.

Good luck with your quest for an answer. I hope you get some reduction

of symptoms soon.

Regards

Inge

reading

>

> Hi Laurie,

>

> Thanks for your support! I think I got your post and Barbara's post

> mixed up. So much for trying to multi-task. I can't keep anything

> straight anymore!

>

> I was telling Barbara that I just purchased a scale a couple weeks

> ago, so I will take your advice and see about the water retention

> issue.

>

> I hate that anyone else has symptoms like these to deal with, but

> glad I am not alone. With your myclonus, do you always feel the jerk

> as you drop something? I have had some myclonic activity mostly in

> my legs but occasionaly my hands will jerk about but I haven't

> noticed it occuring when I drop things. After plunging a toilet

> about a month ago, I noticed I began having muscle spasms in my upper

> right wrist just above where the swelling and pain are. These have

> continued off and on since I plunged the toilet. Never had them in

> that area of my arm before I did that. I asked my PCP if he thought

> that had anything to do with it, but he wasn't sure. he said it was

> possible since he felt the issue with my wrist is a muscle issue.

>

> I just get frustrated that something so simple as plunging a toilet

> could cause me problems a month later.

>

> Thanks for your answers and supoprt!

>

> a

>

> > >

> > > Hello to all,

> > >

> > > I am undiagnosed, but my regular PCP is considering mito with

> me. I

> > > feel like I have little to offer the group at this time due to my

> > > limited knowledge, but wondered if I could ask yet another round

> of

> > > questions.

> > >

> > > My symptoms started a year ago last April, so I haven't been

> dealing

> > > with them long. They seem to come and go. One of my initial

> > > symptoms was incoordination/balance issues. It was terrible for

> > > about six months and then seemed to go away until just recently.

> > >

> > > I have noticed that I am again having trouble maintaing my

> balance,

> > > and am having difficulty again with getting up from setting

> positions-

> > > I start to stand up and only get about 3 inches up, but then its

> > > like the message doesn't get to my legs fast enough, or the

> muscle

> > > just don't work and I end up back in a setting position.

> > >

> > > I am also having a terrible time with dropping things. I can't

> seem

> > > to hold onto anything for the life of me.

> > >

> > > I saw my doctor recently because the area just below my right

> wrist

> > > is swollen and it hurts to move it. He said he believes its due

> to a

> > > muscle issue, but isn't sure. He said its a weird place to see

> > > swelling and I have had to wear a wrist brace for the last 3

> weeks.

> > >

> > > I guess my questions are, with any kind of mito disease, can

> symptoms

> > > come and go, and can swelling of body parts be an issue? My

> ankles

> > > and knees also swell each day. I have also been waking up in the

> > > middle of the night to eat, and I really don't understand it. It

> > > almost feels like an animal instinct. Does anyone else have to

> do

> > > this?

> > >

> > > Most days I just deal with fatigue, muscle spasms,vision issues

> and

> > > sensory problems. I seem to go through cycles of gastrointestinal

> > > problems, and at times seem to cycle through other types of

> symptoms

> > > as well. I have also recently started having problems with

> misuse of

> > > words when I write and speak which was another initial symptom I

> > > started with that seems to wax and wane.

> > >

> > > I'm just really frustrated because I don't understand what is

> > > happening to my body. I don't seem to be any worse than I was at

> > > this time last year, but I'm not any better either. I also have

> days

> > > of debilitating fatigue and I wake up everday in a lot of pain

> that

> > > last several hours each morning, and then I am usually pain free

> a

> > > couple hours but I end up going to bed hurting each night as well.

> > >

> > > Any thoughts or suggestions? I am on an anti-inflammatory and

> > > sleeping medication.

> > >

> > > Thanks,

> > > a

> > >

> > > Medical advice, information, opinions, data and statements

> contained herein

> > > are not necessarily those of the list moderators. The author of

> this e mail

> > > is entirely responsible for its content. List members are

> reminded of their

> > > responsibility to evaluate the content of the postings and

> consult with

> > > their physicians regarding changes in their own treatment.

> > >

> > > Personal attacks are not permitted on the list and anyone who

> sends one is

> > > automatically moderated or removed depending on the severity of

> the attack.

> > >

May 28, 2005

Barb, do you know anything much about the clinics at KU? If I should have to go

down there is there a place at the hospital I can stay if I am not an

in-patient? I know when I had my Gamma Knife at Research my husband and I had

to go to a motel as they wouldn't let me go back until the next morning. There

is no one that could do any more than take me and come back to get me. When I

had my B-12 shot Thursday week my legs/feet were so very swollen that the

treatment nurse took my BP and it was 192/92 so she called my PCP, I stayed

until after lunch to see her. She told me that she wasn't sure if it was my

heart or my lungs and did a UA and some lab work so I guess I will hear from

them sometime Tuesday. I had called and left a message on the 19th about my

legs/feet and about a place on my I scraped 11/17/04 that had never healed and

heard nothing back. I do so hope and pray that everyone will have a

turn-a-round with their health problems, I am keeping all of you in my thoughts

and prayers. Dolores

Barbara Seaman wheatchild@...> wrote:a, Dr. Barohn is chief

of neurology at KUMC, so they sent you to the

head cheese. I have not seen him, but I know other patients who have. I hope

it goes well and that the local neurologist will also be helpful. It does

sound like your PCP is trying hard to help and that is a great blessing.

BTW, the CRP is more sensitive than sed rate for inflammation, so it's worth

checking when inflammation is suspected. It can be positive when sed rate is

neg and has been for me.

Take care,

Barbara

_____

From: [mailto: ] On Behalf

Of onefulloffaith

Sent: Friday, May 27, 2005 4:12 PM

To:

Subject: Re: more questios...

Hi Barbara,

I have been tested for MS ( I have had 2 normal brain MRI's, a normal

spine MRI and a normal LP). I have heard its possible to have

lesions small enough to cause symptoms but not show up on MRI's. My

doctor has agreed to do MRI's at least every six months until we

figure out what my problem is. I saw a rheumatologist in March who

felt that my symptoms were more neurologic in nature and not related

to his field.

My doctor did follow up on doctors you suggested (Thank you so

much!). He requested a specific neurologist at KU (not sure who) and

KU changed it a Dr. Barohn (a neurologist) when they learned

he was referring for possible mito issues. I see him on July 26th.

I see a local neurologist that specializes in MS on June 20th.

Hopefully one or the other will have some ideas.

I guess I need to start journaling my daily symptoms again to see if

there is a pattern. I was doing it on a regular basis until my old

pcp and the first neuro I saw listed in my medical records that I

was " anxious " due to my note taking/symptom list.

I hate that anyone else has these problems, but I'm glad to hear I am

not alone. I just get so frustrated sometimes!

I just bought a scale a couple weeks ago (trying to lose some weight)

so I will take your advice and see if I am having issue with water

retention.

Thanks again, I hope this finds you well!

a

> Hi a, You've had good responses from others, but just wanted

to add

> one thought. I presume MS has been ruled out, given all the balance

> problems, dropping things etc? These symptoms would be very typical

of MS,

> as would the " remission. " Fatigue, pain is also common in MS. I

agree with

> bug that the more common disorders are usually ruled out before

mito is

> considered, and that the swelling would certainly warrant a work-up

with

> rheumatology. Unfortunately, there are a number of different

disorders that

> can cause these symptoms, and sometimes it takes time before the

patterns

> become clear and point in the right direction. Meanwhile, I hope

you have

> found good medical help. Did your doctors follow up on any of the

names I

> provided? I do know a good rheumatologist at KUMC. He has taken

care of me

> since 1983.

>

> Take care,

>

> Barbara

>

> _____

>

> From: [mailto: ]

On Behalf

> Of onefulloffaith

> Sent: Thursday, May 26, 2005 11:31 PM

> To:

> Subject: more questios...

>

> Hello to all,

>

> I am undiagnosed, but my regular PCP is considering mito with me.

I

> feel like I have little to offer the group at this time due to my

> limited knowledge, but wondered if I could ask yet another round of

> questions.

>

> My symptoms started a year ago last April, so I haven't been

dealing

> with them long. They seem to come and go. One of my initial

> symptoms was incoordination/balance issues. It was terrible for

> about six months and then seemed to go away until just recently.

>

> I have noticed that I am again having trouble maintaing my balance,

> and am having difficulty again with getting up from setting

positions-

> I start to stand up and only get about 3 inches up, but then its

> like the message doesn't get to my legs fast enough, or the muscle

> just don't work and I end up back in a setting position.

>

> I am also having a terrible time with dropping things. I can't

seem

> to hold onto anything for the life of me.

>

> I saw my doctor recently because the area just below my right wrist

> is swollen and it hurts to move it. He said he believes its due to

a

> muscle issue, but isn't sure. He said its a weird place to see

> swelling and I have had to wear a wrist brace for the last 3 weeks.

>

> I guess my questions are, with any kind of mito disease, can

symptoms

> come and go, and can swelling of body parts be an issue? My ankles

> and knees also swell each day. I have also been waking up in the

> middle of the night to eat, and I really don't understand it. It

> almost feels like an animal instinct. Does anyone else have to do

> this?

>

> Most days I just deal with fatigue, muscle spasms,vision issues and

> sensory problems. I seem to go through cycles of gastrointestinal

> problems, and at times seem to cycle through other types of

symptoms

> as well. I have also recently started having problems with misuse

of

> words when I write and speak which was another initial symptom I

> started with that seems to wax and wane.

>

> I'm just really frustrated because I don't understand what is

> happening to my body. I don't seem to be any worse than I was at

> this time last year, but I'm not any better either. I also have

days

> of debilitating fatigue and I wake up everday in a lot of pain that

> last several hours each morning, and then I am usually pain free a

> couple hours but I end up going to bed hurting each night as well.

>

> Any thoughts or suggestions? I am on an anti-inflammatory and

> sleeping medication.

>

> Thanks,

> a

>

> Medical advice, information, opinions, data and statements

contained herein

> are not necessarily those of the list moderators. The author of

this e mail

> is entirely responsible for its content. List members are reminded

of their

> responsibility to evaluate the content of the postings and consult

with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

one is

> automatically moderated or removed depending on the severity of the

attack.

>

> _____

>

May 28, 2005

Dolores, Yep, I know a lot about the clinics at KU. I've spent lots of time

there. No, there is no place to stay at the hospital if you are out patient.

There are several motels close by, but we never stay overnight as it is just

a one hour drive. The past two years, I have not been going to KUMC much,

though I am still in touch by phone and email with several docs there. I

have moved most of my care to local doctors because the trips were just too

long and hard. The KU docs now serve as consultants for my local docs when

they have questions. Some of the clinics can be very slow. I have waited up

to 3 hours past appointment times. Once for a two o'clock appt, we were not

finished until 7. But different clinics run differently. It depends on the

doctor and the day. I have friends who drive me in and stay with me. It's a

very big place. If you go in, you might want someone to stay with you and

help you get around.

Take care,

Barbara

_____

From: [mailto: ] On Behalf

Of Dolores

Sent: Saturday, May 28, 2005 9:38 AM

To:

Subject: RE: more questios...

Barb, do you know anything much about the clinics at KU? If I should have

to go down there is there a place at the hospital I can stay if I am not an

in-patient? I know when I had my Gamma Knife at Research my husband and I

had to go to a motel as they wouldn't let me go back until the next morning.

There is no one that could do any more than take me and come back to get me.

When I had my B-12 shot Thursday week my legs/feet were so very swollen that

the treatment nurse took my BP and it was 192/92 so she called my PCP, I

stayed until after lunch to see her. She told me that she wasn't sure if it

was my heart or my lungs and did a UA and some lab work so I guess I will

hear from them sometime Tuesday. I had called and left a message on the

19th about my legs/feet and about a place on my I scraped 11/17/04 that had

never healed and heard nothing back. I do so hope and pray that everyone

will have a turn-a-round with their health problems, I am keeping all of you

in my thoughts

and prayers. Dolores

Barbara Seaman wheatchild@...> wrote:a, Dr. Barohn is

chief of neurology at KUMC, so they sent you to the

head cheese. I have not seen him, but I know other patients who have. I hope

it goes well and that the local neurologist will also be helpful. It does

sound like your PCP is trying hard to help and that is a great blessing.

BTW, the CRP is more sensitive than sed rate for inflammation, so it's worth

checking when inflammation is suspected. It can be positive when sed rate is

neg and has been for me.

Take care,

Barbara

_____

From: [mailto: ] On Behalf

Of onefulloffaith

Sent: Friday, May 27, 2005 4:12 PM

To:

Subject: Re: more questios...

Hi Barbara,

I have been tested for MS ( I have had 2 normal brain MRI's, a normal

spine MRI and a normal LP). I have heard its possible to have

lesions small enough to cause symptoms but not show up on MRI's. My

doctor has agreed to do MRI's at least every six months until we

figure out what my problem is. I saw a rheumatologist in March who

felt that my symptoms were more neurologic in nature and not related

to his field.

My doctor did follow up on doctors you suggested (Thank you so

much!). He requested a specific neurologist at KU (not sure who) and

KU changed it a Dr. Barohn (a neurologist) when they learned

he was referring for possible mito issues. I see him on July 26th.

I see a local neurologist that specializes in MS on June 20th.

Hopefully one or the other will have some ideas.

I guess I need to start journaling my daily symptoms again to see if

there is a pattern. I was doing it on a regular basis until my old

pcp and the first neuro I saw listed in my medical records that I

was " anxious " due to my note taking/symptom list.

I hate that anyone else has these problems, but I'm glad to hear I am

not alone. I just get so frustrated sometimes!

I just bought a scale a couple weeks ago (trying to lose some weight)

so I will take your advice and see if I am having issue with water

retention.

Thanks again, I hope this finds you well!

a

> Hi a, You've had good responses from others, but just wanted

to add

> one thought. I presume MS has been ruled out, given all the balance

> problems, dropping things etc? These symptoms would be very typical

of MS,

> as would the " remission. " Fatigue, pain is also common in MS. I

agree with

> bug that the more common disorders are usually ruled out before

mito is

> considered, and that the swelling would certainly warrant a work-up

with

> rheumatology. Unfortunately, there are a number of different

disorders that

> can cause these symptoms, and sometimes it takes time before the

patterns

> become clear and point in the right direction. Meanwhile, I hope

you have

> found good medical help. Did your doctors follow up on any of the

names I

> provided? I do know a good rheumatologist at KUMC. He has taken

care of me

> since 1983.

>

> Take care,

>

> Barbara

>

> _____

>

> From: [mailto: ]

On Behalf

> Of onefulloffaith

> Sent: Thursday, May 26, 2005 11:31 PM

> To:

> Subject: more questios...

>

> Hello to all,

>

> I am undiagnosed, but my regular PCP is considering mito with me.

I

> feel like I have little to offer the group at this time due to my

> limited knowledge, but wondered if I could ask yet another round of

> questions.

>

> My symptoms started a year ago last April, so I haven't been

dealing

> with them long. They seem to come and go. One of my initial

> symptoms was incoordination/balance issues. It was terrible for

> about six months and then seemed to go away until just recently.

>

> I have noticed that I am again having trouble maintaing my balance,

> and am having difficulty again with getting up from setting

positions-

> I start to stand up and only get about 3 inches up, but then its

> like the message doesn't get to my legs fast enough, or the muscle

> just don't work and I end up back in a setting position.

>

> I am also having a terrible time with dropping things. I can't

seem

> to hold onto anything for the life of me.

>

> I saw my doctor recently because the area just below my right wrist

> is swollen and it hurts to move it. He said he believes its due to

a

> muscle issue, but isn't sure. He said its a weird place to see

> swelling and I have had to wear a wrist brace for the last 3 weeks.

>

> I guess my questions are, with any kind of mito disease, can

symptoms

> come and go, and can swelling of body parts be an issue? My ankles

> and knees also swell each day. I have also been waking up in the

> middle of the night to eat, and I really don't understand it. It

> almost feels like an animal instinct. Does anyone else have to do

> this?

>

> Most days I just deal with fatigue, muscle spasms,vision issues and

> sensory problems. I seem to go through cycles of gastrointestinal

> problems, and at times seem to cycle through other types of

symptoms

> as well. I have also recently started having problems with misuse

of

> words when I write and speak which was another initial symptom I

> started with that seems to wax and wane.

>

> I'm just really frustrated because I don't understand what is

> happening to my body. I don't seem to be any worse than I was at

> this time last year, but I'm not any better either. I also have

days

> of debilitating fatigue and I wake up everday in a lot of pain that

> last several hours each morning, and then I am usually pain free a

> couple hours but I end up going to bed hurting each night as well.

>

> Any thoughts or suggestions? I am on an anti-inflammatory and

> sleeping medication.

>

> Thanks,

> a

>

> Medical advice, information, opinions, data and statements

contained herein

> are not necessarily those of the list moderators. The author of

this e mail

> is entirely responsible for its content. List members are reminded

of their

> responsibility to evaluate the content of the postings and consult

with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

one is

> automatically moderated or removed depending on the severity of the

attack.

>

> _____

>

May 28, 2005

Thanks Barbara, for the info as my current neurologist told me that he would

like for me to be able to go thru a clinic at KU and it has been years and years

since I have even been there. I have a friend at Holton that I asked her to she

would take me as she is fairly clear as to how to get there and perhaps how to

get around in the hospital. It has been awhile since she has been there but I

do so hate to ask people that work to tie up their time for me. I live in fear

that I will ask a favor of someone, as there is always the off chance of an

accident and I could never forgive myself if I caused injury or even death to a

person that was taking me somplace. She does so much for me already as when she

goes to Netawaka she makes sure that she checks the flowers on my Great-aunt's

grave for me, plus every couple of weeks she goes by where my husband and son's

gravesites to make sure everything is OK there. My son, Bill took me to the

Holton cemetery for my husband's birthday in

March, my Grandson, Jeff and his family are going to take me to Holton to the

cemetery and the to the store as I have been sick about all week and wasn't able

to make my ride to the store Tuesday thusly, I am completely out of bread and

milk. My PCP put me on Lasix again, on Potassium pills and told me to go on a

Low Sodium diet so I am trying to figure that one out, I haven't used salt for

years. I didn't realize that a 6 1/2 oz sirloin strip steak that Bill is

planning to grill this weekend has 1,357 mg of sodium in it and 2,400 mg daily

is all a person should have on a low sodium diet, Bill found that out by

reading the nutrition facts on the package. When Jeff called me yesterday to

see how I was feeling he told me he would check with a nutritionist at St.

Francis hospital (where he works) and try to get something to bring home to me.

Again, thank for the info about KU.

God Bless, Dolores

Barbara Seaman wheatchild@...> wrote: