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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#11 | |||
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Southern Bell- the calcium thing is quite normal- happened to me more than half the 60 sessions that I did. Im glad the procedure went well!
Mike- Im going to answer that for her, and hopefully I hit the nail on the head....from all my previous experiences, it takes a few treatments to start feeling the benefit of the procedure, seems to be a little faster than IVIG, though. It does last a little shorter time span than IVIG, again from my own experience. |
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"Thanks for this!" says: | pingpongman (07-25-2011) |
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#12 | ||
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Member
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No immediate results. I'm sure it will take several treatments before you see any improvement. But in my case, no one can predict when or if I'll see any change because I have two autoimmune diseases (MG and SPS) and trust me everytime I tell someone that I have Stiff Person Syndrone they say "what".
I've read that getting SPS is one in a million (no kidding). It is a very rare disease so no one knows how to treat it or even if you can. Only hope the plasmaphreresis will help reduce the symptoms so that I can cut back on some of the drugs that I have to take just to get through the day. It will be interesting to see if I can see an approvement in just the MG. I can tell the difference in the two diseases as far as my body reaction/condition during any given day. And at this point (two years down the road) I'm almost willing to try anything that might have a positive effect and I know for sure that IVIG did nothing to change my symptoms. Southern Bell ![]() |
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"Thanks for this!" says: | pingpongman (07-25-2011) |
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#13 | ||
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Senior Member
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Stiff Person Syndrome is one of those diseases that reminds me how very much worse off I could be...I sure hope that the treatment works for you.
Abby |
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#14 | ||
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Member
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Hello everyone,
I had my second treatment yesterday and as with the first I had no problem what so ever. This time the nurse laid the recliner all the way back which was more comfortable - the first treatment the nurse only slightly reclined the chair. Once the procedure was over, I did have a light head feeling that I did not experience before which I contribute to the laying further back. I was weak when I finally got up (as before) but we prepare for that by utilizing my wheelchair to go to the unit. I was weak for the remainder of the day, but today I feel pretty good. No real change in my MG/SPS symptoms, but again I think that will take some time. My best to all, Southern Bell ![]() |
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"Thanks for this!" says: | pingpongman (07-30-2011), suev (07-31-2011) |
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#15 | ||
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Junior Member
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Southern Bell, I live near Atlanta also. I have only been diagnosed with MG since May this year and started IVIG infusions in June for 5 days, 3 days in july, and next week I will be getting 3 more days at Piedmont.
I was diagnosed with multiple sclerosis 10 years ago and nothing I tried for it worked so I may have both or just the MG as the symptoms overlap. Have you been on Mestinon? The neuro doesn't want me on predisone because I am also diabetic. Hope this works for you and it's nice to find a MG website that is as active as this one. Gabriella |
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