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Old 11-15-2006, 06:52 PM #1
Angie B Angie B is offline
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Question Reboot

Hi. Im new to this forum but I have found all the threads very informative. I was diagnosed with MG 3 years ago and have had all the conventional treatments (Mestinon, Prednisone, IVIG, Pheresis, Thymectomy). These have worked fairly well and although I have not had a consistant time period of feeling great. The MG seems to affect my eye, swallowing and lungs primarily. In Sept I had a flare that put me on a ventilator for a week. That being said, I have been doing a lot of research on some more aggresive therapies for MG for those that do not respond to standard protocal. There are many studies that have been done on "rebooting" the immune system through chemotherapy and partial Bone Marrow Transplants. Anyone have any information or experience with that? I am 38 have 3 kids under 10 and am looking for an agressive treatment or even a cure. John's Hopkins has incredible data with very promising results using the "reboot". Any thoughts? Thanks.
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Old 11-15-2006, 07:38 PM #2
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Hi Angie - welcome to the forum...I had a thymectomy in March, am treated now with IVIg, Imuran and Mestinon - have been on Prednisone but I am not on it now. I am 43 and have a 13 year old. My MG initially affected my speech, swallowing and vision - later my breathing and my limbs. I have never had a breathing crisis. I am interested in doing anything to halt this thing but haven't heard of the treatment that you are talking about involving the bone marrow. I did a google search and found several articles...these seem to be what you are talking about. Both articles are from 2003. It would be interesting to see if there is something more current. Keep us posted.
Thanks,
Gabe

http://www.neurologyreviews.com/dec0...onemarrow.html

http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract
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Old 11-15-2006, 08:43 PM #3
Angie B Angie B is offline
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Default Reboot

Thanks Gabe. I have a meeting tomorrow with my Neuro (who is the best and an expert in MG) to discuss going to Johns Hopkins. She did her residency there and they have a superb Neuro department. I got a lot of my "reboot" research from her as well as the web. I will keep you posted and let you know what I find out. The process is quite long and involved but if the overall outcome is a cure or remission....

Thanks for the links.
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Old 11-16-2006, 11:39 PM #4
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Angie,
Is your neurologist in Minnesota? If you don't mind sharing who you see it would be great. I am interested in seeing a MG specialist that "gets it".
Thanks,
Gabe
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Old 11-17-2006, 12:30 AM #5
Angie B Angie B is offline
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Default Reboot

Sure Gabe. I see Dr. Susan Evans at Noran Neurological in Mpls (also clinics in Fridley and Maplewood) There are several Nuerologists (at least 4 that I know of) at Noran that are wonderful with MG. I have been extremely happy with the whole staff there and if your looking for a solid group of Neuro's I would highly suggest giving them a call. Im not sure if Dr. Evans is seeing new patients but I have not had a bad experience with any of the Doc's there- I've seen many while in the hospital. Good luck. Let me know how it goes.

Angie
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Old 11-17-2006, 07:09 PM #6
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Thanks Angie!
Gabe
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Old 11-30-2006, 03:57 AM #7
Angie B Angie B is offline
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Default Reboot

Hi Everyone.
It has been really nice to read all the threads and I have gotten such encouragement form reading all your posts.
I have decided to try the "reboot" and will be entering the hospital next Monday. The reboot consists of high-dose cytoxin for 4 days, then a shot to stimulate health immune growth, and I mean healthy. There are of course risks and the chance that it could make me sick for a couple of weeks...but the possibility of remission is great! Johns Hopkins has been doing this for awhile with amazing results. A large portion of the patients have experienced littlle to no myasthenic symptions after the inital dose. Doing cardio classes, living life, taking care of kids, moving, breathing....
I will keep you posted, if you'd like, on this fairly new treatment, or new protocol.
Thanks again for allowing me to come into your community and gain some insite into this disease.

Angie
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Old 11-30-2006, 12:17 PM #8
GUMBY GUMBY is offline
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Good luck to you. I wish you all the best in this world and yes , keep us posted on all the details if you can. Are you going to Hopkins for this???
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Old 11-30-2006, 03:10 PM #9
Gabe Gabe is offline
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Good luck Angie! Keep us posted..
Gabe
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Old 12-22-2006, 12:59 AM #10
Angie B Angie B is offline
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Default Working....

I wanted to post a quick update. I received a "reboot" late Nov to early Dec. This included 4 days of high-dose Cytoxan (chemotherapy) in the hospital. This was followed by multiple doses of a drug to stimulate bone marrow growth (painful process!) It's an aggressive treatment and a bit risky, but I am convinced it worked. I have been waking up without pain, double vision, fatigue and I can swallow! I have lived for 3 years never knowing what kind of day I would have. 16 hospitalizations in under 3 years...My eye has very little droop and breaths are full. I realize it's a bit early to jump on tihs one, but I do need to say that I have not felt this good in years. My Neuro was thrilled when I saw her today- strength was better then she has ever seen from me. All I told her was thank you for taking the risk.
I don't know if it would work for everyone, and the side effects are not great...in fact down right horrible, but If this can give me back a life..welll worth it.
Like I mentioned earlier, j.Hopkins has done the most research on this one.

Take care everyone and have a wonderful Christmas!

Angie
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