Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

 
 
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Old 04-02-2009, 02:20 PM #10
hcmiller92 hcmiller92 is offline
 
Join Date: Apr 2009
Posts: 24
15 yr Member
hcmiller92 hcmiller92 is offline
 
Join Date: Apr 2009
Posts: 24
15 yr Member
Heart There is hope: MAKE recovery from MG happen!

Quote:
Originally Posted by erinhermes View Post
"Hello Whirlwind! Thankfully now MG CAN BE CONTROLLED! Back in the 60's it was knid of a "death sentence", but now with proper treatment, you can live an almost normal life........"
If you rid yourself of the myasthenia first, most of the rest of your problems will fade away. Myasthenia is a miserable affliction and most people don't do what they need to do to make it go away...and your doctor may be the locus of the problem!

I was so severely debilitated by myasthenia four years ago that at times I couldn't walk, talk, dress myself, eat, swallow medication. I was in the worst decile, statistically for the disease. I was put on an immunosuppressant and a small dose of prednisone. I went through 17 rounds of plasmapheresis. One year ago in December, I went into a week-long coma.

It wasn't until I started on MASSIVE doese of prednisone that I finally felt I could live. I started on 100mg per day on the "on" day and 50 or so on the "off" day. I immediately responded. I am now like normal and I was at the bottom of the barrel for MG victims.

If you suffer ANY MG symptoms anymore, you may need to give this regimen a whirl. Many of the immunosupressants are worthless. DO NOT, I repeat, DO NOT listen to your doctor. Most are clueless about treatment of MG, even the finest and most studied of neurologists. Do not take no for an answer. 100 mg of prednisone will probably not hurt most people (though, they too, have side effects and you WILL need to taper and wean yourself off), but, the flipside is you may have a chance at recovery. Yuo must pull out all the stops and wage war against this miserable disease.

From,
Bottom of the barrel
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