Hi Annie,

With the tongue thing, my tongue isn't 'chewed up' looking, the way an 'atrophied' tongue is. It's weird. It only has that triple-furrowed appearance when I can't move it. Otherwise, it looks completely normal, other than the fact that it has a crimped look at the sides.

For example, for some reason, my tongue was working perfectly yesterday for the entire day, and it looked skinny, small,red- the way it's supposed to. It took much longer than usual for my voice to go nasal, and I didn't have slurring as much. I'm not sure why I was having such a great day yesterday in terms of the MG, but I was! This is why I feel sure it's from the MG, the way my tongue looks. If it were truly atrophied, it'd always look that way. But it's only when I can't move it. I can't flex it, so it's all fat. It almost looks like the blood supply to it has been cut off too. It's weird.

Desert- I know what you mean about the mestinon. I don't know if I can agree with the neurologist, but, it looks like taking 120 mgs of mestinon doesn't cause problems for me. In fact, I think that it might work very well. I think that this entire time, I've been under-medicating, and maybe that's why I've been so 'refractory.' But I do agree with you, logically, when you look at how mestinon works, it seems that people *should* be able to overdose on it at least at some dosage. I totally agree with you.

Jana- I'm so happy to hear that your neuro. has had such good results with Imuran, but am sad that you can't give it a try! The way you've described the liver problems in your family, it reminded me of alpha 1 deficiency, like what Joanmarie has. It affects the liver and lungs- can cause liver cancer/problems, and early emphysema in people who have it. It's genetic. I noticed that Joanmarie has trouble with allergies and such, and you've said the same thing with other meds. you've tried. I'm probably totally off the wall here, but the way you described it reminded me of it.

Lizzie,

I know what you mean...I met a woman in the hospital, a nurse, who was in remission with cellcept. I noticed that her voice was a bit nasal, but other than that, she was doing great! She had had a thymoma too. She originally tried Imuran, but her liver enzymes got too high, so she was switched to cellcept. Both my neuros. say taht they start at the weakest immunosuppressant first, then move up the ladder. The last one I saw said that prednisone increases the risk of cancer too (but it's the lowest of all), so the first line of treatments is prednisone (mainly 'cause it works faster), tehn Imuran, then Cellcept/Myofertinil (sp.? I totally spelt taht wrong...lol), then Cyclosporine, etc.

I read about your reaction to Imuran in another thread. That sounds really scary. I'm so sorry you went through that! What exactly was it about Imuran taht caused this reaction? Do you think that it reactivated some kind of infection or something?

Well, yesterday was actually my first day taking it. Guess what? I still have my widsom teeth on the left side. They've been causing problems for me for years, but since the MG, I've bee reluctant to take them out. BUt they're infected, so I've been on antibiotics, and I got the upper one taken out yesterday. Yesterday was also my prednisone day, so I had the mother of all headaches. Not sure if it was from the Imuran, toothe being removed, prednisone (ate sugary/salty things yesterday), but it was brutal!

I'm worried about taking out the lower one because they have to freeze one of the nerves taht supplies the tongue and lips. I remember that when I got the lower one on the right side taken out, it took like 12-hours to be able to move my tongue again. I noticed the mild slurring after that. I've always wondered about the removal and whether this made the MG worse, or *choose* to attack that particular nerve? I know it sounds weird, but that removal really affected my being able to move my tongue well. It's probably a coincidence.

Anyway, despite my headache yesterday, the entire day was a good one in terms of moving around, and it's seeped into today. Still able to move, without the profoudn weakness. I hope that when the imuran kicks in, I'll be practically normal!

Thanks gals!!

nicky

Nicky,
I hope the new Mestinon dosage helps. I know I felt so much better when I found the best dosage for me. I am glad you had a good day and hope you have more good days.

From my personal experience you can overdose on Mestinon. I have experienced acute muscle cramping, acute stomach cramping, gastrointestinal problems and flowing nose/watering eyes problems when my dosage was increased. The military had us carry pyridostigmine bromide in our gas masks in case of nerve gas attack during the first Gulf War. Their dosage was only 30 mg. Many of us take a lot more than that every day. I believe it is like any other medicine..too much of a good thing is not good.