Hello,

I have recently been dx'd with MG after years of suffering. My regular neurologist sent me to one who specializes in MG. Many tests were performed & finally I was dx'd with MG after my blood work came in positive for Acetylcholine Receptor Antibody (ARA)

I have had severe swallowing, speech & breathing difficulties over the years. I have been in & out of remission now for about 6 years. My last bout was so severe, I dropped 20 lbs. I am petite to begin with & tall. (5'7) My weight dropped down to 100 lbs. I was dehydrated & starving. I managed to pull out of that somehow, even before being dx'd with MG. Have also had some severe reactions to 'low dose' medications & mild sedation for colonoscopy where I nearly went into cardiac arrest.

Because I am 48 & reaching the cut-off age for thymectomy, I am being booked to see the surgeon. I will see him, but still not sure I will go ahead with it, unless they find a mass in my thymus. Still have not had the scan to see what it looks like.

I manage to eat these days, though much more slowly than normally. I have also learned not to panic when choking on food & actually 'breathe' through it! My weight is up again, higher than it's ever been, though I am not thrilled with the belly weight I am carrying now.

The only meds I am on, are mestinon (just started 5 days ago!) & Nexium, as I have pretty severe GERD as well.

The mestinon gives me severe twitching, all over, but it's the worst in my face - especially my eyes! I have not been sleeping well due to it. So after reading posts from many others in another group, I decided to cut out my evening pill - unless I am going out for a night on the town, which is RARE for me anymore!

I was dx'd with Fibromyalgia many years ago & just recently CFS, due to a second blood test coming up positive for Epstein Barr Virus. I've also tested positive with some metabolic tests that were done.. but no one seems too worried about the poor results (which makes me question WHY these tests were ordered in the first place!)

I am EXHAUSTED on a GOOD DAY!! It's a good day if I manage to get the dishes done, the garbage taken out, showered, hair & makeup done! Mind you, some days when I plan to go out, I am exhausted after showering, fixing my hair & makeup, so much that I won't even bother going out!

That said, it's LATE & I need to get to bed!

Good night all!