Hello all-thanks for the responses. Ill go 1 at a time.

Abby- Yes. This is an experimental trial. Only three people with MG have done this, all with good outcomes as of now.

Prograf only took 2 months to show an improvement (however, I am on the highest dose) and its side effect are not terrible. The only one I have constantly are tremors throughout my body, especially in the hands. Dont get me wrong, im still pretty weak at times, but it definitly is worth looking into if your immunosupressants are not working. (Also keep in mind i take prednisone, imuran, and do monthly ivig treatments.)

Mike- i agree with you there.

4-eyes- Thanks for reassuring me. The criteria to get into the trial is quite extensive, so I know that I am qualified, however, there is a difference between that and deserving it.

But, if my insurance pulls through, and everything goes well with the screening process, I will be going through with it.

Alice- I see your point, and I see it coming more from a MD's standpoint, which I cannot blame you for

This procedure has been done in three patients (I know this is small) but all three have had a major impact on their quality of life. Hopkins (where my neurologist is) is showing great promise in curing autoimmune disorders with reseting the immune system- I have asked her, however, she thinks I am too young to do it, and the procedure is different.

So there is promise out there, and if I can contribute to it, I want to.

I agree in a life threatening terminal illness this is more feasible and acceptable, but if there is a slight chance I can have that 'normal' life that I used to have...or even to a better degree, I want take it.

Im having to take breaks writing on the keyboard...so maybe that gives you an idea of how my disease fluctuates. (I know all of ours do, but mine never stays constant, I guess because im a teen and in college.)

It is an extremely tough decision, and I thank you greatly for your input. It means alot, and everything you say makes sense. But I have been waiting for something like this to pop up, and if everything falls in place I will be doing it.


Mrs. D. - I see where your coming from. I understand the risks of chemo, my moms had it various times throughout her life and Ive seen what it does to her. Im not afraid of its side effects, yet.

Honestly, the drugs im on right now that dont even mask my symptoms 70%, all have life threatening side effects, alike those of chemo..so that risk doesnt scare me either. I have come to accept that someday, sadly, I will get cancer..its a fact of life and what i have gone through with medications. I know it will happen, and Im prepared for it as well as I can. I know that sounds very cynical, but it is the reality.



Thank you all for your comments