Just thought I would give you guys an update of what my Dr.'s plan is:


I had the SFEMG...needle in the forehead..not a pleasant experience. The doctor could automatically tell I had MG (They were a little skeptical because of the EMG that duke sent was a little blurry). He was fishing around in my forehead for about an hour to finally say..yeah I bet your seronegative as well, correct? I was pretty impressed. He was very good at what he did, and it impressed me that the results were there as I was laying on the table- it took Dr. Howard 3 weeks before he diagnosed me on his SFEMG.

Anyways- after the test my doctor came in to see me and just explained that last month my body did not absorb the Imuran as it was supposed to and the numbers went down again only 2 points though. She said once the MCV (Mean corpuscular volume) which is what they monitor for Imuran, reaches 100-105 I will be feeling much better. It was at 85 when we started 7 months ago and now is at 92, hopin for it to go up again soon.

I asked her about taking me off prednisone..she said I could slowly taper off of it yet my body still needs it as well as the IVIG as the Imuran works its way up.

She shot me down on the cytoxan procedure (reboot) because she said the two patients she has had with it didnt do that well, and Johns Hopkins has only done it twenty times on Auto Immune patients. She found it to be too risky for at 18 year old to try and maybe down the road when more studies have been done on it she would possibly consider- yet only after failing one more drug.

There is a new trial going on there as well- to any of you who would travel there it is for a new drug that would work within minutes after taking it, though you do have to be seropostive to do it...hense why I cant try it.


So ^^ Take advantage of that if you can..


Im doing pretty good- IVIG is setting in more, and I have it again memorial day weekend, yeeehaw.

Hope you all are doing well.