I've been getting progressively worse. I haven't posted here in a while, but let me catch you up.

I was hospitalized for 8 days in July with a "crisis." I was incredibly weak, and getting weaker every day. I honestly thought I was hypoglycemic from a new antibiotic I was on (I have Chronic Lyme disease, too.) It's one of the side effects, so I ended up going to ER on a Saturday because if it was making me more and more hypoglycemic I didn't want to keep taking it.

My sugar was fine. The ER doc said I was having an MG exacerbation. I was admitted and it was like, I could not get out of there. I got weaker every day and could barely walk or hold a limb up. They gave me IVIG right away (which I get anyway two days every other week.) I got so much worse in the hospital I could not believe you could be that weak. They called my neuro and he just kept saying it takes "3-5 days for the IVIG to kick in." Everytime I told the nurses I was having trouble breathing, they said my pulse ox was ok. It ran between 92-95 generally, I'm normally 99-100. I tried to explain.

I had a pulmonary function test and it was bad. So bad during the part where you have to puff and puff, the RT said I wasn't even registering on the maching and I had to keep trying harder over and over.

They tried to send me to inpatient rehab but could not find me a bed due to my being on IVIG. Finally I got a little stronger and could walk a few steps and they sent me home. When I got home, my home care PT STILL tried to send me to inpatient rehab. By now I just refused.

It took me two months to get back to baseline. I saw my neuro, he said I'd been in crisis. I had missed a few IVIG treatments here and there due to insurance issues and he said I can NEVER miss IVIG again.

At Thanksgiving, I had put off IVIG for a week so as not to lose the holiday week, and overdid it. I ended up in the ER but this time instead of going to the local small community hospital went to the larger one where my neuro is. I was there for 13 hours. For one thing they said I should have been in the ICU the entire time I'd been hospitalized in July. They told me over the phone to come in for admission. The admitting neuro decided I wasn't in crisis and sent me home since my vital capacity and breathing tests were within normal limits. I was not as sick as in July but feared I was close. I went home and got better quickly, thankfully.

My neuro is my 3rd one. Every time I see him, I tell him I am getting worse. The mestinon no longer works even though I have gone up to 90 mg 3 x a day. I can barely tell the difference. I have so little arm strength left that if I write (like a few Christmas cards) I am in so much pain, I have to use pain creams and sometimes take Vicodin. I cannot pick up anything, open a water bottle, hold anything, etc.

I used to have no ocular involvement at all, just generalized, but now I can't hold my eyes up when they do that test. My vision is SO BAD I feel like I am going blind. Sometimes things even look smokey. My legs are my best part. Probably due to all the years of running and walking, etc but my arms were always REALLY strong and now they are useless. I can't shower myself, dress myself, or even lift my laptop or dinner plate.

My neuro said I am on IVIG and Mestinon and there is nothing more he can do. To add meds would be backtracking; IVIG is far advanced than any of the other treatments. In his opinion, I am further along being on IVIG and adding any other meds that are usually treatments BEFORE IVIG is futile. I don't want to be on any more meds, but I have gone as far to beg him for a thymectomy. He said there is no proof it works.

I just got fitted for a special wheelchair because I can no longer sit up for very long. I can't hold up my head, or I"m in pain. I can't even hold my arms unless they are on armrests. I have to wait three months for a specially built $5,000 wheelchair so I don't have to lie in bed all the time.

I have strange things happen that I don't understand, like the tongue thing. It's been going on for not too long, but it only takes a couple breaths outside in the cold and I talk like a drunk. I don't have Raynaud's. I am having water dribble down the sides of my mouth again like before I was diagnosed, it's like it is going backwards. I can't drink out of a glass correctly anymore, it falls right out of my mouth.

If I do much of anything the pain that ensues the next day is horrible, mainly in my arms and hands. They seem to be my weakest link. Next would be back and shoulders.

I am at a loss with my neuro. My primary care doc wants me to get another opinion. My neuro says it's an incurable disease, this is your life now. There is nothing that can be done.

I certainly don't want to go on Prednisone, but why isn't he putting me on Immuran or Cellcept? It seems almost everyone is on those.

I hate going to the ER and it seems I never know when to go. I can rarely function to do anything. Thank you for telling me straight up the tongue thing is a sign of worsening. I forgot to mention it to my neuro but I seriously doubt he would have anything to say about it.

I've now had at least 4 positive tests so at least no one doubts my results. They also just cut my IVIG in half, because they believe I can get the same effect on a lower dose. I hadn't noticed any major changes in weakness; it's been a couple months now.