Quote:
Originally Posted by AnnieB3
You're welcome, Kate. We all know how rough this process can be.
What does muscle biopsy "mild" mean? They usually give a description of what that means. Do you have your test results? If not, get them.
You really need a doctor who knows about the Congenital Myasthenic Syndromes AND MG. Would you mind saying where you live so we might suggest one for you?
If you have Bell's Palsy, vitamin B12 (in the methylcobalamin form) will help that, along with steroids. Did they even mention treating it, if they think that's what is wrong?!!
There aren't other diseases that cause fatigable muscle weakness.
Does your double vision go away when you close one eye? MG double vision is called "binocular," and when you close one eye, it goes away.
You might not have asthma. Some of the CMSs respond to asthma medication. Have you seen a pulmonologist? If not, see one!
Cold can also make MG worse, so don't use a cold pack on your eyes very often! Anything too cold can also damage nerves.
Careful with ephedrine/stimulants, too! It can adversely affect your heart.
You need an expert, or a team of them, someone who knows the details of MG much better.
I hope you can find someone to help you!!!
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Hi all
I had muscle biopsy and the answer was mild myopatic aspecific changes and neuro told it was nothing important.
A have no Bell's Palsy but bilateral Bell's phenomenon .
My double vision was confirmed few times during Hess test .and its binocular as yours.
I didnt know that cold can make myasthenia worse ,it's very interesting.
I live in Italy .I really hope my disease will have a name..becouse live with serious health problem and without right diagnosis is awfull.And pulmonologist told me :you have to be helped becouse your respiration is weak and he told its like myasthenic weakness.
So for me is crazy that somebody tell that is not myasthenia ...