Tyson, Have you gotten a copy of the patient manual that they send out with the intake papers?? If not call and ask them for one. They can email it to you. It covers everything from A-Z including the risks/benefits/statistics. It is most assuredly the goal that you lead a nearly normal life. The goal is to have your defective immune system destroyed and your body build a brand new one that will not attack your body as your current one does now. Thus you no longer have MG. Does that mean that you can't have that rogue cell that will kick the new system into overdrive?? NO. There are no garuntees at all to any of it. As to the risk of infections, yes that is a no brainer. BUT you will be tested from head to toe including a dental check for ANY signs of current issues. Those would have to be treated prior to undergoing the transplant of course. And after the transplant there is a protocol for checking your blood counts on a regular basis until your white count is once again back to normal. You will be on antibiotics to prevent most infections after the transplant. There is a lengthy recovery time involved as with anything, chemo, which is what you will get is hard on the body. So expect a good few months to take things easy. But if you are like me, you need that time to rebuild your overall strength that you have lost from the MG itself anyways. So is a good time to do both. The success rates to this have been high so far. As you know. They are strict about who is able to do it and who isn't because they are still under FDA scruitiny and must submit candidates to their "board that is ensuring compliance with all study components" Unless you have that positive blood test they won't allow you to be in the study. Again, all of this is in the paper work that they can email to you. I know that was an issue earlier for you concerning the protocol.
As to what to do?? No one can tell you that. You have to make that choice for yourself. None of knows how sick or well you are with the MG or how it effects your life. Only you can know that for sure.
I can share with you my opinion-----I am very much disabled now. I can barely make it to a chair to sit up. I am currently working with therapist to sit on the side of the bed and just dangle for 15 mins every two hours and that is a LOT for me. But more than I could do not so long ago. This past 15 months or so I have been relegated to living in a bed. I want more. There is a chance with a reboot to have more. So I am planning on working on getting that done this year. But I want enough strength to walk across a room even with a walker and not be dog tired when I get to the other side. When I can do that I am going for the reboot.
I tell you all of this for a reason. I wasn't this bad until my 4inpatient stays last year this time. I lost soooooo much ground then. And have not gained it back. Know what??? I have been considering this reboot for a few years now. Back when Hopkins was the only place doing them. I thought oh I'm not that bad. I can build up and get stronger. I can ..........insert numerous reasons as you like. Basically I messed up big time. I waited so long that now things are to this point. I didn't take the opportunity while i was "more well" and less "disabled" from it. I regret that big time. Every time I sit and dangle on the side of the bed tapping my feet I regret it. Everytime a new milestone comes for the kids or another anniversary for dh and I rolls by, I regret it. What could I have been doing this year??
We moved with DH job over a year ago to this new town, I have seen nothing of it. I can't go to the beach. I can't swim in the gulf. I can't shop or sight see any of it. What I have seen has been from the back of an ambulance 8 times though. and a handful of visits to the doctor's office. That's it. Can't even go to walmart. (and that is saying something when I wnat to go to walmart because I hate walmart with a passion, but just to be able to go) I have a wheelchair, but by the time I visit the neuro I have enough energy to get back to the house and transfer to the bed for a nap. Not a life at all. Imagine if I had done the reboot when I first had the option?? Where would I be today?? What would my life possibly be?? REGRETS. I waited. The worse you are when you have it done the less you can expect to regain. Oh I'll regain a lot, but will it be enough to live that "near normal" life where I can go and do?? My body has atrophied much in this time. How much of that can be rebuilt?? Some, I am praying a good deal of it. But I also have to expect that a 50 percent improvement would be the best I can hope for now. Yes that is great, but had I done it earlier how much could I have gotten back?? I will never know that.
I have a friend who had a reboot done, she is doing fabulous. Her MG is almost non existant in her life. She still takes her meds and such. But she is living a good life. Getting back to her "nearly normal" ways. But she did it before it destroyed her body.
It does work. It has a great success rate. There are several online accounts of the reboots, just check into finding some.
Feel free to PM me if you'd like to chat.
But if I had to do it again, I'd gotten it done a long time ago.
Hope this helps you in your decision making. Again, we all have to deal with life in many and varied ways when it comes to the MG, so just pray and search your soul.
Deb

Deb- thank you for contributing so much to this post. I know no one on this forum can make the decision for me, I am just looking for direction from some, such as you because you feel I would benefit.

I am sorry to hear of your disabilities it sucks to hear this happening, yet I hope you can get the reboot..I would imagine it would help, unless it has gone to far and destroyed your muscle receptors as it sounds like you are extremely weak.

As for the antibody positive, I was having thoughts of giving up on the trial because I am antibody -, but I have been persistant with the doctors there and they said they would amend the protocol if I had a certain amount of EMG's performed (which I have all came back positive (6 of them).

As of right now I qualify and I am very excited to start the process. I have decided to do it. They are awaiting my medical records which should be at the office by next weekend, and after they read them and look at my intake form they plan on setting up appointments for the consultation!

I hope to get the point where MG is almost non existant in my life, and I believe with this procedure it will happen. Being 19, and otherwise healthy I think the odds are in my favor and hopefully I can get this started soon.

Also, being dependent on IVIG helps with the admission process.

Hope your doing alrite

Tyson my thoughts and prayers are with you. I can not imagine having this disease at age 19. I had 70 years of a pretty heathy life so I have a lot to be thankful for. I just pray this works for you.
Mike

Thanks Mike, means alot.

Best of luck Tyson. This is a stem-cell "repair" experiment and not a complete reboot of your immune system right? Or are they doing a reboot using stem-cells instead of marrow?

Thanks Brennan...
Nope, they completely destroy your immune system with chemotherapy drugs and then grow the immune system back from stem cells that are collected by means of a plasmapheresis type procedure. They harevest the cells until you are ready to undergo the stem cell treatment.

Best of luck to you,Tyson.
It's amazing that when we are young (or younger),things seem to be completely different ,our perseption is free of fear,risks,fails ets.Thats why we can do certain things ,when we are young ONLY.
An believe you or not,most of the time we thank ourselves for being courage and pushy !
I hope,you will have time to consider all pro and cons,and may God help you to make right decision.You deserve it 200%.
Good luck,Tyson.
Marina.