Re: New here....could use some advice

[Guest guest]

a

Welcome to the group.

Some with mito do improve on steroids. I saw a temporary improvement many

years ago on bursts of prednisone. Mito can affect the glandular system and

therefore supplementing with steroids can help.

Are you on the mito cocktail? If not, that might be a reason for such slow

recovery, if what you have is mito. It sometimes takes some people a long

time to get out of a crash. I increase my CoQ10 when in a crash and sleep

just as much as my body wants to. I have to set the alarm to get up to eat,

take meds and cocktail and get lots of fluids in. Then it is back to bed.

Also, there are several anestheics that are not reommended if you have mito.

You might want to make an appointment with the Muscular Dystrophy Clinic.

Mito is one of the neuromuscular diseases and many of their doctors (not

all) are becoming more knowledgable in this area. I have had great care from

my MDA neurologist.

I hope you find something that helps you.

laurie

>

> Reply-To:

> Date: Mon, 02 Aug 2004 13:52:01 -0000

> To:

> Subject: New here....could use some advice

>

> Hi All,

>

> I have a possible dx of Myasthenia gravis, which is being

> questioned. Two neuros including the one at CCF said Mito would be

> the other possibility for my troubles.

> I DO have a positive blood test for MG, but all further testing,

> including 3 other blood tests were negative. My mom died from

> lupus,btw. I have been on prednisone for 2 1/2 yrs, so don't know if

> that's affecting the blood work or not. Has anyone ever tested

> positive like this for MG and then found out they have Mito instead?

> They have so many symptoms in common. Looking back to my childhood

> now, I feel like Mito makes more sense....I just don't know.

>

> I've never doubted I had MG until recently. I had surgery June 2nd

> and am not recovering well at all even with an increase in steroids.

> In fact sometimes I feel like the steroids are making me worse. My

> main problems are swallowing/breathing, hoarse/weak voice, drooping

> eyelids, fatigue, blurry vision and general muscle weakness. I'm

> also having lots of GI problems, twitching, leg cramps, some

> cognitive problems and recently found out I have right sided heart

> block. I was always very skinny until the pred kicked in. I've had

> some of these problems for many years, but in 2001 had a big crash

> and couldn't swallow anything, had severe breathing probs, lost my

> cough reflex, very weak, etc. A kind doc started me on prednisone

> even without a dx and I did show improvement. This shouldn't happen

> with Mito, right? I'm confused.

> Has anyone crashed this severely and recovered to a functional

> status. I never felt really well again, but I was able to eat

> better, breathe, etc.

> I've just been so ill lately and I'm frightened. I just started

> seeing a new doctor and he's in no hurry to test me or do a muscle

> biopsy.

> If anyone has any thoughts or advice on my situation I would

> appreciate it. Thank you for your help.

>

> a

>

>

>

>

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>

>

[Guest guest]

Dear a,

Your problems sound very much like mito. I have had most of the problems

you have

been experiencing. In 1998, when I started to lose my hearing quite

rapidly, the docs put me on chemotherapy, hoping it was being caused by

an autoimmune vasculitis. It turned out to be mito, but I did feel

better when on the prednisone.

(My hearing did not improve at all.)

Many here also have autoimmune diseases. I have hypothyroidism and

Sjogen's Syndrome. I think there are strong links among these diseases.

Where do you live? Perhaps we can give you some good recommendations

concerning mito docs.

Glad you are with us. This is a group of wonderful, caring people!

Sincerely,

S.

PA

[Guest guest]

Dear a,

Your problems sound very much like mito. I have had most of the problems

you have

been experiencing. In 1998, when I started to lose my hearing quite

rapidly, the docs put me on chemotherapy, hoping it was being caused by

an autoimmune vasculitis. It turned out to be mito, but I did feel

better when on the prednisone.

(My hearing did not improve at all.)

Many here also have autoimmune diseases. I have hypothyroidism and

Sjogen's Syndrome. I think there are strong links among these diseases.

Where do you live? Perhaps we can give you some good recommendations

concerning mito docs.

Glad you are with us. This is a group of wonderful, caring people!

Sincerely,

S.

PA

[Guest guest]

Dear a,

Your problems sound very much like mito. I have had most of the problems

you have

been experiencing. In 1998, when I started to lose my hearing quite

rapidly, the docs put me on chemotherapy, hoping it was being caused by

an autoimmune vasculitis. It turned out to be mito, but I did feel

better when on the prednisone.

(My hearing did not improve at all.)

Many here also have autoimmune diseases. I have hypothyroidism and

Sjogen's Syndrome. I think there are strong links among these diseases.

Where do you live? Perhaps we can give you some good recommendations

concerning mito docs.

Glad you are with us. This is a group of wonderful, caring people!

Sincerely,

S.

PA