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Old 11-12-2015, 09:47 AM
TXIzzy TXIzzy is offline
Junior Member
 
Join Date: May 2015
Posts: 11
8 yr Member
TXIzzy TXIzzy is offline
Junior Member
 
Join Date: May 2015
Posts: 11
8 yr Member
Default on cellCept now

Quote:
Originally Posted by Lily7 View Post
Not sure where to post my introduction -- but hello to all. I received a diagnosis a few months ago after a lot of negative testing. I was beginning to think no one understood how horribly tired I was. Then at last I had a SFEMG and it was conclusive -- all the things that were going wrong for me were most likely due to to MG.
I had been having lots of trouble with double vision, three times had prisms added to my prescription. When my eyes went double another time I was sent to a pediatric opthamologist and he did strabismus surgery and it has helped a lot. I still get some double vision, but at least now I can drive.
I had complained of fatigue, trouble swallowing, shortness of breath and while coping with the eyes I saw a cardiologist, neurologist, pulmonologist -- you know how that goes.
Finally the second pulmonologist got me on a cpap machine, which made sleeping possible for me again, but still was struggling with shortness of breath. That's when pulmonologist #2 sent me to neurologist # 2 and we finally got the mystery solved.
Honestly the day we drove to the SFEMG test I told my husband, this is the very last test I am going to do. If they don't find something, I am giving up and just going to -- what, I don't know, but do something that didn't involve embarrassing doctor visits. But as it turned out, the last place you look, you find the answer. 🙄
I am still not in a stable state yet, trying cell cept, Mestinon, and not doing to well with the breathing muscles. I don't know what the future brings, I am pretty scared to be honest. First I was sad, now I am feeling worried about the future.
So enough about me. Any advice is certainly welcome.

My doctor started me on mesonon for the drooping eyelid and now on cellcept. I am really surprised that he suggested prixms for your glasses. I was told because of the constantly changing nature of the double vision any changes to glasses would not work, and this has definitely been the case. I put up with the double vision for about 4 months until the cellcept started taking effect. From what my doc says, he could effect a much quicker stabilization with prednisone but prefers the slower and safer journey with the celcept. So far he is right on. Be very careful with prednisone...it can cause major damage in your body. Oh and mestonon does nothing for double vision...just the droopy eyelid. I am now off of this and only take it if my eyes start to burn and get droopy. Good luck and hang in there.
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