Ask?
 

Is it worth asking my doctor about the reboot? My symptoms now are getting better as the ivig Is kicking in..I'm assuming she will say stay on imuran..but I want stuff done.. I want to be healthy...

I'm sure as you all get- continuing on from last post. But I just don't want to have come all this way for this appointment for her to say that after the emg. I'm not alright w the fluctuating days I have and I wanna go back to school.

Hope yu all are feelin good

Of course you should ask. IVIG is just a bandaid. The other drugs rarely afford us remissions. Reboots don't either, for that matter, but when you reach a certain point, you have to grab what you can. However, you must listen to your doctor's advice as she is your partner in all this.

If I hadn't done it, I would still be wondering "what if." Now I know if/when the symptoms come back, I will ask for it again, if not the total SCT.

Good luck.

Exactly..the prednisone was supposed to b band aid..the imuran works to some degree but I feel like it could be better and I'll take that if I can..

What exactly is the reboot called so I don't sound stupid while suggesting?

High dose cyclophosphamide or high dose cytoxan (same thing, just generic vs brand name for the drug). Johns Hopkins did extensive study of it. In fact, I emailed with the doctors there prior to my procedure.

I just had my emg done and the tech is like..they think you have mg...ok..this number should be in the negative...

I hope they don't say its inconclusive to me having it..what would
I have otherwise. Guess I'm at the right place for it..but also I'm on ivig pred and imuran..it makes sense I would be strong..

I'm about to go into the sfemg part..that was just the repetitive stimulation piece. I won't take what he says at all...just confused at this point.

Good plan to not put alot of stock in what tester says sometimes. When I went to mayo clinic I listened and felt and heard they really knew their stuff. They know enough to get the muslces warmed very warmed for best outcome. My univerisity has the testing area in a very cold room in the basement! So of course I always test negative there!!

But at Mayo I got excited as it seemed they were testing so many places more than back here and I was warm tho didnt really know the significance then and how much better my muscles are when cold. So I left messages saying it was positive and boy was I fooled. Yes they found a number of myotonic responses which I assume is why they suspected myotonic dystrophy but no what MG would show. Now this was IN December in Minnesota and I was very very cold on a day to day basis warmed room or not. And I didnt have mestinon out of me as long as I feel I need. It was less than 24 hours but more than the univerisity did allow.

I did learn that the SFEMG is taken more seriusly as a marker for MG so if it doesnt show there and a supposedly expert doc did the test it would be the norm to go with that result. I did find out that Cleveland takes no outside SFEMGS because they are very dependant on the doc that does it. They only do their own (this is per a firend of mine that went there).

I so hope you get the results you want and need. YOur desire to go forward is high. I just ask that you hear that it may not be this time or this place you get what you need but dont give up. YOU know what you know. They dont live in your body. They go by the tests. It stinks but that is the deal. I have had more positive things happen since my vision went the MG way in a flare march of 2010. Before that I didnt have double vision so it was impossible to get anyone to consider my eyes involved tho they and my whole face droop in the gallows fashion.

Annie59

Annie59

I have never knew there was such a thing as a "reboot". What does it do for you?

The "reboot" is something new that's being tried in a few medical centers. Actually, it's only "new" to MG - it's essentially the same procedure used to do a bone marrow transplant for someone with leukemia. They harvest your bone marrow (I believe), you go through high-dose chemotherapy to completely kill your immune system, and then they reintroduce your bone marrow to rebuild your immune system, hopefully without the MG. Considering the risks associated with it, I think it's done more as a last resort for those who have tried everything else and had no success, instead of as a generally available treatment. I also understand that, even if it works initially, the MG can come back in the future, necessitating another "reboot" or treatment with other meds.