new member

[Guest guest]

Bet,

Panic attacks used to be my whole life at one point. I averaged anywhere from

10-30 a day. The only time I didn't have them was while I slept. I'd wait all

day just so I could go to bed at night and be free of them. I got so bad that I

stopped leaving my apartment. Then I realized this was not a good sign, so I

went for help. Turned out that the best " medicine " was to get the hell out of

my abusive marrage. (although Paxil worked wonders too)

I too have tried to get on my site. Apparently Dean, (my bf and associate at

FM/CFS/ME Resources) is having trouble, it's his server, which he gererously

provides for free. Hopfully this will be resolved by the end of the

afternoon....or sooner? I'm going to take this forced break and crawl back into

bed. Having a horrible day, migraines setting in.

Best Wishes,

Misty

Patient & Owner

FM/CFS/ME Resources

http://fmcfsme.d-3systems/

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

Welcome Sherrie!

I live in Kentucky too. What part of the state are you in?

Kat

>

> Hi, Im 49 years old. My name is Sherrie, and I live in Ky. I have

> dealt with fibro among alot of other medical problems with around 20

> years....diagnosed in 99 finally.

[Guest guest]

>

> Hi

> My name is , I am 45 with 4 kids, and I was given the FMS

> diagnosis in 1998 - I went through the anti-depresent and after

> no improvement I gave up and started figuring out for myself what

> worked for me. I developed hip bursitis last year and saw a

> specialist for that and he confirmed the FMS and felt there was no

> help that he could give - such is the state of medicine in rural

> Ontario Canada.

>

> I am interested to know if anyone has experienced ongoing Shingles

> with their FMS - I break out in a rash 2 or 3 times a year.

>

> Thanks

>

>

Hi I'm 43 yrs old was diagnosed with fm in back in October of

2005 I also experienced not so good reactions from all the

antidepresants dr put me on , I like you found what works for me. I

fell 1 month ago tried catching myself and screwed up my shoulder, I'm

off of work now for the next 3 to 6 weeks, the only thing that dr gave

me was an antiimflammitory which I already am on pain medication, on a

daily basis to help with the pain from the fm. It does get real

frustrating.If you need someone to listen to you I'm here, cause we

all feel your pain! LeAnne

[Guest guest]

Welcome Tesa.. I hopw you enjoy this group

Bet

>

>

>

>

> Hi Tesa, Welcome to the group! I hope you find the love,support and

> encouragement that I have since I've been a member,about 3 mo. now.

> You will find that many of us have other health problems includeing

> depression.

> God Bless You!.........Love

>

> tesarae74 <tesarae74@... <mailto:tesarae74%40yahoo.com> > wrote:

> Hello everyone! My name is Tesa, I'm a WAHM. Four daughters, one

> step-daughter and one step-son. Yep... 6!! I have alot of questions,

> mostly would just like to see that I'm not really crazy and other

> people have some of the same things going on as I do. Diagnosed with

> fibromyalgia 3 years ago, but was suffering with symptoms since I was

> in my mid 20's. 33y/o now.

>

> 1. While it is wonderful to share our experiences with everyone on the list as

> to what treatments do and don't work for us, pls always check with your dr.

> Some treatments are dangerous when given along with other meds as well as to

> certain health conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't matter what it is) pls don't

> be afraid to ask for help. It is the first step to trying to make that

> situation better.

>

> 3. To unsubscribe the e-mail is:

> Fibromyalgia_Support_Group-unsubscribe

> <mailto:Fibromyalgia_Support_Group-unsubscribe%40yahoogroups.com>

>

> 4. Also, it is not uncommon for more than one member to be feeling bad at the

> same time when it comes to flares and b/c of that potentially take something

> another member says the wrong way. And that includes the things that one

> member may find funny (even if it's laughing at fibro itself) even though we

> who deal with illness whether one such as fibro or multiple illnesses try to

> keep a sense of humor.

>

> 5. Pls let's be gentle with each other, and if you are having a bad day pls

> let us know so that we can do our best to offer our support.

>

> Have a nice day everyone.

>

>

[Guest guest]

Work-at-Home Mom

>

> What is a WAHM? Thanks! Becca

>

[Guest guest]

While I haven't been focused on recording my workouts here much, I have

been exploring healing type workouts. As many of you know I have health

issues which make working out extra challenging. After much research I

have found so many types of workouts are healing.

So I added in a rotation which I call healing workouts. The workouts

help with the mind-body connection, repairing neuropathways, helping to

establish new ones, increasing balance, strength, flexibility, range of

movements o the joints, pain relief, and improving brain function.

My list of workouts I do has grown, but from what I am reading it is the

variety that helps in making new neuropathways and strengthening the

ones that are damaged.

My workouts lately have been YIN yoga which involves holding poses 5

min. or longer to create a separation in the bones which helps move

blood and healing fluids into the spaces while providing a gentle

traction and healing effect. So far the poses I have encountered have

all been sitting which is great for me. It always feels beneficial

during and after the workout for days. It releases pain and stiffness

in the back and joints all over. Griley Yin yoga.

Classical Stretch DVDs help with balance, range of motion, flexibility,

yet is a wonderful healing type movements which blends ballet, ti chi,

qi gong and other effective movements. I always feel better after doing

the workout. Classicalstretch.com  I like all the seasons. 

Barre and Ballet workouts help with the neuroconnection is my opinion by

activating the muscles more deeply than many workouts I have ever done

which helps me in moving.

T-TAPP is new for me. I only have downloads on youtube that I have

done. The simple workouts are extremely effective at activating the

muscles. The are gentle, no impact so far and have kicked my butt in a

wonderful way. I was so impressed I ordered a workout dvd which should

arrive soon. Muscle activation is the key.  T-tapp.com

Callanetics is great for helping to heal the back and different joint

support systems. It again is no impact and wonderful. The dvds are

outdated but they are great for healing as many have reported on

low-carb friends website.

NIA is also new. Debbie and s created a series of workouts

that combine martial arts along with aerobics to make a no impact

effective workout. The movements look silly, but I find my whole body

relaxing with the dance. Tensions just leave and a sense of silly,

playful joy fills my body. My heart rate increases as the beat of the

music and dance increases. The workouts remind you to feel your feet or

to reach out with your arms to feel your environment. It has you set

your intention at the beginning of the workout. I feel like I can feel

energy fill my body as I try to replicate the movements while hoping no

one comes into the room where I work out as I feel I look silly.  NIA means

neuromuscluar activation. 

Forrest Yoga is amazing. The instructor used to be paralyzed and was

able to reverse her paralysis to become a very flexible wonderful

teacher. I was impressed watching part of the workout how she is able

to help people with back injuries modify the exercises and activate the

muscles to get a more effective workout. I hope to get her workouts on

dvd soon. Mine was a download. She gives me hope in reversing my back

injury.

Kettlebells are great for increasing the range of motion, balance,

strength, cardio endurance and are non-impact !!!! There are so many

testimonies of people recovering from horrible injuries with

kettlebells.

Walking workouts are also on my list when I feel the need. It also

helps with my balance, coordination, and works my muscles differently

from just going for a walk. It helps with the marching like movements

working the hip flexors. To make it even more challenging I add barre

like movements and hold the t-tapp positioning to increase the muscle

activation.

Qigong !!! Years ago I took a healing touch course and learned about

energy healing. Qigong is a very mild no impact workout that helps you

to move energy through your body. It helps with flexibility, enegry,

coordination, balance, and general well being. I hope one day to try

out Lee holden and other Qigong instructors. My old dvd only has a

couple of workouts on it. . . One day I will be able to save up for his

set of workouts.

I am sure there are many other forms of healing workouts which I have

yet to discover. There is movement therapy which is a mix of dance

workouts which help the neuro-connections.

Subject: New member

To: " mscured " <mscured >

Date: Sunday, July 10, 2011, 8:42 PM

 

---------- Forwarded message ----------

Date: Sat, Jul 9, 2011 at 2:31 PM

Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today!

To: mscured Moderator <mscured-owner >

My husband was just diagnosed with MS. He spent 2 months in the hospital

while the dr's tried to figure out if it was MS or cancer. It has been three

weeks since he got out and only got confirmed diagnosis yesterday. I read

alot about Ginko Biloba suppose to help and started him on that along with a

good multi vitamine. We are gluten free and vegan as well. I read in the

China Study that Gluten could cause issues with MS so that was the first

thing we did. We eliminated gluten. He tried some gluten yesterday and today

is a really bad day.

I would be interested in any other remedies that would be benificial to him

as it will be quite a bit of time before anything the doctors will work on.

He will see the nuerologist at the end of the month so until then we are on

our own.

We are also doing therapy exercises still. He had 3 weeks of therapy right

before he left the hospital. So any info you guys and gals can give us would

be a blessing.

Take care

Donna in VA

-

[Guest guest]

Hi Donna,

Have a look here:

http://www.webspawner.com/users/introtoldn/index.html

All the best,

Yannic

>

> ---------- Forwarded message ----------

> From: Donna Shad <sdbmshad@... <mailto:sdbmshad%40yahoo.com>>

> Date: Sat, Jul 9, 2011 at 2:31 PM

> Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today!

> To: mscured Moderator <mscured-owner

> <mailto:mscured-owner%40yahoogroups.com>>

>

> My husband was just diagnosed with MS. He spent 2 months in the hospital

> while the dr's tried to figure out if it was MS or cancer. It has been

> three

> weeks since he got out and only got confirmed diagnosis yesterday. I read

> alot about Ginko Biloba suppose to help and started him on that along

> with a

> good multi vitamine. We are gluten free and vegan as well. I read in the

> China Study that Gluten could cause issues with MS so that was the first

> thing we did. We eliminated gluten. He tried some gluten yesterday and

> today

> is a really bad day.

> I would be interested in any other remedies that would be benificial

> to him

> as it will be quite a bit of time before anything the doctors will

> work on.

> He will see the nuerologist at the end of the month so until then we

> are on

> our own.

> We are also doing therapy exercises still. He had 3 weeks of therapy right

> before he left the hospital. So any info you guys and gals can give us

> would

> be a blessing.

> Take care

> Donna in VA

>

> -

>

>

[Guest guest]

Hi Donna,

There is a lot that your husband can do to help himself...Go slow, there is a

wealth of good info but it can get overwhelming. Listen to those with MS they

know best..Most neuro's are marginsl at best. Lean on this group...no drugs is

best. Go to www.thomasbayuk.com If you cannot afford to uy yhe book, send me

your mailing address and I will send to you.

Best wishes,

Tom Bayuk

Re: Yahoo! Groups: Welcome to mscured. Visit today!

To: mscured Moderator <mscured-owner >

My husband was just diagnosed with MS. He spent 2 months in the hospital

while the dr's tried to figure out if it was MS or cancer. It has been three

weeks since he got out and only got confirmed diagnosis yesterday. I read

alot about Ginko Biloba suppose to help and started him on that along with a

good multi vitamine. We are gluten free and vegan as well. I read in the

China Study that Gluten could cause issues with MS so that was the first

thing we did. We eliminated gluten. He tried some gluten yesterday and today

is a really bad day.

I would be interested in any other remedies that would be benificial to him

as it will be quite a bit of time before anything the doctors will work on.

He will see the nuerologist at the end of the month so until then we are on

our own.

We are also doing therapy exercises still. He had 3 weeks of therapy right

before he left the hospital. So any info you guys and gals can give us would

be a blessing.

Take care

Donna in VA

-

[Guest guest]

CCSVI treatment has proven beneficial for people newly diagnosed, check into it

http://www.ccsvi.org/

also helpful nutitional info here: http://www.thisisms.com/ftopict-17004.html

(it's a good site)

generally helpful MS websites:

http://www.direct-ms.org/

http://www.msrc.co.uk/

http://www.webspawner.com/users/directoryofmultalt/index.html

http://www.overcomingmultiplesclerosis.org/

There are others, but that's a good start

Pino

>

> ---------- Forwarded message ----------

>

> Date: Sat, Jul 9, 2011 at 2:31 PM

> Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today!

> To: mscured Moderator <mscured-owner >

>

>

> My husband was just diagnosed with MS. He spent 2 months in the hospital

> while the dr's tried to figure out if it was MS or cancer. It has been three

> weeks since he got out and only got confirmed diagnosis yesterday. I read

> alot about Ginko Biloba suppose to help and started him on that along with a

> good multi vitamine. We are gluten free and vegan as well. I read in the

> China Study that Gluten could cause issues with MS so that was the first

> thing we did. We eliminated gluten. He tried some gluten yesterday and today

> is a really bad day.

> I would be interested in any other remedies that would be benificial to him

> as it will be quite a bit of time before anything the doctors will work on.

> He will see the nuerologist at the end of the month so until then we are on

> our own.

> We are also doing therapy exercises still. He had 3 weeks of therapy right

> before he left the hospital. So any info you guys and gals can give us would

> be a blessing.

> Take care

> Donna in VA

>

> -

>

>

>

[Guest guest]

there is an ms seminar on oct 20 in coraville i will be ther      hope you

can make it

________________________________

To: mscured <mscured >

Sent: Thursday, October 6, 2011 3:50 PM

Subject: new member

 

---------- Forwarded message ----------

Date: Thu, Oct 6, 2011 at 1:39 PM

Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today!

To: mscured Moderator <mscured-owner >

Hi, My name is Casey. I was diagnosed with MS about 12 yrs. ago. I went in

to have my eyes checked and they couldn't figure out what was wrong and

sent me to doctor that gave me the news and walked out of the room!! Nice

doctor!!

I was put on Beta some thing!! I had to give myself a shot every other day.

Took it about a year and stopped. Now I take nothing. I have numb legs and

lost most of the used of my left arm and I am left handed. Some good days

and some not!! But I know that I'm luckier then most and I can live with it

but sure would like my left hand back without filling my body with CRAP!!

yvette@...

[Guest guest]

Hi Kaye,Lovely caring doctors, aren't they!You've come to the right place - lots

of helpful ideas here in the archives.Just to point out that I had CCSVI

treatment and my eyes have been perfect ever since and my numbness went.You can

do a lot with diet too.Welcome!Janet

To: mscured

From: atlanteanproductions@...

Date: Thu, 6 Oct 2011 15:50:24 -0500

Subject: new member

---------- Forwarded message ----------

Date: Thu, Oct 6, 2011 at 1:39 PM

Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today!

To: mscured Moderator <mscured-owner >

Hi, My name is Casey. I was diagnosed with MS about 12 yrs. ago. I went in

to have my eyes checked and they couldn't figure out what was wrong and

sent me to doctor that gave me the news and walked out of the room!! Nice

doctor!!

I was put on Beta some thing!! I had to give myself a shot every other day.

Took it about a year and stopped. Now I take nothing. I have numb legs and

lost most of the used of my left arm and I am left handed. Some good days

and some not!! But I know that I'm luckier then most and I can live with it

but sure would like my left hand back without filling my body with CRAP!!

yvette@...

[Guest guest]

Hi Ann,

Your welcome! I would definitely say you and your husband should be retested for

Lyme through a specialized lab. I have suffered a lot neurological damage over

the last six years and would hope that others will be more fortunate to find it

sooner:) welcome again.

Best,

[Guest guest]

An amazing TED talk.

" Dr. Terry Wahls learned how to properly fuel her body. Using the lessons she

learned at the subcellular level, she used diet to cure her MS and get out of

her wheelchair. "

>

> > Check out this video on YouTube:

> >

> >

[Guest guest]

welcome denise and it's good to talk, have you researched ldn ?

best/peter/london/ppms

________________________________

To: mscured <mscured >

Sent: Wednesday, 7 December 2011, 4:13

Subject: new member

 

---------- Forwarded message ----------

Date: Tue, Dec 6, 2011 at 9:12 PM

Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today!

To: mscured Moderator <mscured-owner >

Hi-I'm glad to have found this group! I was diagnosed a year ago with

relapse-remitting MS. I feel that I have been suffering with the disease

for 20 years, when my eye symptoms began. I have been seen at NIH and

Cedar-Sinai, only finally getting diagnosed in October 2010 with over 15

enhancing lesions in my spinal column. My symptoms are visual, a lack of

seeing detail/loss of visual field, drop foot, bladder and bowel issues,

fatigue and some tingling in my face. I am in a clinical trial for

Dacluzimab. I just underwent a 3 day Solumedrol treatment for an

exacerbation which left my legs heavy and my other foot dragging. I don't

think it did much. I am a " foodie " and believe that nutrition is medicine.

I became suspicious of drugs and drug companies when I read that aloe was

counterintuitive to the steroid treatment, that didn't sit well with me. I

looke forward to what this group can teach me!

I am an almost 46 year old single mom to a gorgeous 11 year old son. My

identical twin sister was diagnosed about 15 years ago, and has been a

poster child for Betaseron, having never had symptoms beyond her first 2

presenting episodes.

Thanks for being there!

denise

[Guest guest]

Hi ,

 

I wouldn't just look at the opinion of a neurologist as to a diagnosis of

primary progressive MS... to be honest,,, there is absolutely no way to

diagnosis any disease course as to how progressive it is or how it is going to

affect your body over time.  We see this a lot in this group, individuals become

ill, wind up with a neurologist and then they are diagnosed with MS which can

scare the heck out of someone. I was diagnosed with MS in 2006 and found out

just last year in June that I have chronic Lyme disease bacteria which has

caused my so called MS disease. Google how hard it is to diagnose a so called

disease like MS and you will see articles about the great imitator. Lyme disease

presents the same symptoms and I have lesions on my brain and spine done by a

prominent neuro and hospital. I don;t know if this is allowed on the group or

not, but I would be happy to post my MRI results with the diagnosis of MS and

then show you the blood work results

showing I tested positive for Lyme bacteria. I wasted over 5 years of my life

and let my body become more neurologically damaged due to neuro's and mainstream

doctors who had nothing to treat " The MS they thought I had. "   I could probably

be  mostly recovered today if my Lyme had been found sooner. I was told by one

neuro that it could by Lyme, but what he failed to mention is the a lot of the

tests are problematic and not able to pick up the bacteria. A specialized blood

test needs to be run by a reputable lab such as Igenex and there are a couple of

others. I can only suggest to you that you have your husband have his blood

tested and go from there.... if it is Lyne,,, antibiotics used quickly will

eradicate the tupe of symptoms your husband is having. MS drugs are steroid

based and if your husband possibly has bacteria will only fuel the bacteria and

make him worse.  MS drugs contain a lot of harmful properties and steroids are

not good for

anyone's body and can damage them permanently. Your regulat physician can have

the blood drawn for a specialized Lyme test. the kit is available from Igenex,,

they can send it. It is worth it and Lyme is very , very prevalent all over the

country. I had doctors say there WAS NO WAY I could have it.... UH,,,,,,

RIGHT....... I  only hope others can be treated quicker.  You do not have to

remember a tick bite or see a rash.... I did not..... yet I have chronic

neurological Lyme disease. I do not know how I contracted it except that I am an

animal lover and I suspect I picked it up that way.

 

Happy New Year and I hope your husband feels better soon!

 

Best,

 

 

P.s We have other members of this group that were originally diagnosed with MS

and now know they have Lyme disease.

 

 

[Guest guest]

A Functional neurologist/nutritionst is helping me and he says that less is more

when it comes to supplements.

>

> Hi. I'd like to chime in here because I am not a new member but right now I

feel like one. I have tried so many things. For a while I felt like I was

staying stable --for about 3 or 4 years -- but now the last year I definitely

feel a decline in a number of areas.