Nancy, Have you tried seeing an immunologist? They can look for things that allergists can't. It might be worth a try. Have you had your IgE, IgG, IgA, etc. levels checked? If you see one, try to see a private practice immuno with a very good rep. IVIG might actually help you more than Pred, given everything else!

I'm glad you know what to look for. It think it is more sensible to evaluate much sooner, like you said. I hope it goes well.

Annie

I agree , I really would like to not take prednisone., actually I was just thinking may be the lip swollen and finger swelling was from the fluid., not allergic reaction, because I am still having my hands swollen., so I might just call my neuro anyway and ask him, but then again he will think I am nuts. So I just don't know., I only took my prednisone today., so I know I can quit taking it if I have too.....I don't know my husband says I am making everyone crazy., ...I just don't know.......has anyone else ever had a reaction similar to that for mestinon, I also heard about mytelse., I think that is the correct spelling.
thanks again

Again, this is really a job for an allergist! Have you ever had your tryptase tested?

http://www.phadia.com/dia_templates/Page____1881.aspx

Just take the Pred and see what happens! Stay in contact with BOTH your neuro and an allergist (do you have one?!). There are both good and bad things to having specialists. Again, just don't expect your neuro to be an allergist. It's way over his head because he didn't study it in depth.

When you have a disease like MG plus things like allergies, you need to rely on all members of your "team" on not on just one particular doctor. I know it sucks to have a lot of doctors. But if everything they do gets sent to an internist, then you have actual "coordinated care," which could save your butt.

You're not making everyone crazy. This is brand new to you. You need to ask lots of questions. And you want to do what's best for you. Maybe writing down how the Pred makes you feel, if it's improving things, etc. every day would help. I always keep a log of a new drug like that. And it helps to "journal" about what you're going through in general.

Okay, I'm repeating myself here . . . GO SEE AN ALLERGIST SOON.

Trust your instincts, Nancy, and you'll be just fine.

Nancy,
I agree with Annie again. Let the docs do their job, you can drive yourself nuts trying to figure this all out. When it comes to allegies to medicines, it's better safe than sorry. An allergist will be able to tell for SURE if you are having a reaction to the Mestinon.

Please don't take this the wrong way, but I almost had to laugh when reading your post. There were 3 different times the phrase "I don't know" showed up. I hit that point every now and then, usually when someone asks me how I'm doing and what's being done to help me. I call this my "I don't know" stage with everyone now. That's all I have to say when they ask, is that I'm in this stage and they know I'm frustrated without me having to give details. I just struck me funny to see someone typing it the same way I say it so often.

You're not driving any of us crazy, that's for sure. We've all been there so we understand the confusion and frustration and all the other emotions you are going through. Don't be too worried about taking the Prednisone for now, short term shouldn't cause problems, but you may need to watch certain supplements if you're on it for long. Get the allergist lined up to check you out. Then again you'll have your answer and be able to move on. It's the "I don't know" mode that can drive us crazy!

Love,
Becky