Hi Mike,
Just been reading your thread. I am absolutely desperate for help my daughter who is 14 has progressively become very unwell over the past 18 months. She is now needing to use a wheel chair is tube fed and has permanent blurry vision. She feels nausea 24/7. We sent bloods to Mayo to discover that she was positive to striational muscle antibodies. The doctrs here now have those results but dont know what to do with them or what they actually mean. She had a mri and thymus was clear. They are treating my daughter like her symptoms are in her head. I am so distressed and i am willing to travel anywhere in the world to see anyone. Just wondering if these symptoms plus alot more symptoms of more personal nature are what you are experiencing. I have never been on a forum before and will give you my email so you can write directly to me. dsouthengmail.com
I would really appreciate to talk to you as i cant find anyone else in this same situation. Hoping you are well and that your treatment is continuing to give you some relief.
Regards Danielle
Quote:
Originally Posted by pingpongman
I went through 3 or 4 neuros before I found the 2 I currently see. One is local who I see every 3 months, the other is 45 minutes away and see every 6 months. The one I see every 6 months is the "expert". He was on the team that discovered some of the first antibodies. The 2 doctors confer on my case and work together very well. The "expert" does the full MG panel each time I visit.
My blood work has gone like this. First test negative, 2nd positive for binding,
3rd positive for binding, 4th positive for, Binding, Modulating, Anti-striated muscle, can't remember the 4th. I have a panel that was just done but haven't gotten the results. My Dr was in Chicago for a conference. I'm going to try to get them today. He did another panel my last visit because I was doing so well. He was curious as to what my results would show. He said my case was the most complicated he had seen.
They haven't changed my meds in 6 months because I am doing pretty good. I currently take Mestinon, Prednisone and Cellcept. We stopped my IVIG.
Mike
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