Mike, I have this godawful comparison of "my two faces" that I have put in my book and an even worse one I couldn't bear anyone to see! They don't even look like the same person. If someone doesn't see BOTH photos, they can easily think one or the other is normal.

Since your sister has modulating antibodies only, she may be an odd MG duck like me. So journaling may be the one way for her to figure out how her particular MG "acts." After a while, she will know but since it's so new, she needs to really think about what is going on.

I'm glad she is going to call. I'm like you, very assertive. Your wife seems to be like that too. You are very lucky.

Annie my wife is a life saver. She seems to know more about MG than the local Neuros. She goes in with me to ALL my exams and demands answers.

I have a question relating to me. I am currently on 360 mg of Mestinon (time release), 30mg of neostigmine, 150mg imuran and I seem to be getting weaker. For a while I thought all this medicine was doing nothing till one day I missed one of my 180mg of mestinon and my droopy eye lid instantly drooped shut. So I now know that it is helping some what but this Imuran dosen't appear to be doing anything. The only time I saw improvement was when I was on prednosone but that caused me to have an attack of Diverticulitis and spent 5 days in the hospital. I guess my question is will this imuran do me any good or should I go for IVIG?

Annie I gorgot to tell you my sisters last bloodwork came back negative. So first test was positive and second was negative. Is that weird or what?
Mike

Mike, The blood tests vary. Some antibodies circulate and some stay in the tissue, destroying our neuromuscular junction! It also depends upon what lab ran the test. Was it the same one both times? It doesn't mean that the first one wasn't valid. She should get her test results. Why? Because there is a wider normal range with modulating antibodies (0-19). Even when my test is "negative," I still have antibodies on the higher end. Trends in tests are as important as absolute numbers.

Mestinon Timespan can be useful but you have to be careful with it because how much it "puts out" at any one time is variable.

Did they do the TPMT test on you? If not, they should have done it before you even began taking it.

http://www.labtestsonline.org/unders...tpmt/test.html

Imuran can take longer to kick in than say Cellcept. Everyone responds to drugs differently. Some people do better on IVIG or plasmapheresis. They can now do subcutaneous IVIG, which has fewer side effects (though not benign!) and you can do it at home (through Walgreen's Specialty Pharmacy, IVIG called Hizentra).

How long have you been on Imuran? Talk to your neuro again! It's an art form figuring out what works for you or not. It can take a lot of trial and error.

I wish I had a husband like your wife, if you know what I mean.

Annie