New here....could use some advice

August 2, 2004

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

Recommended Posts