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Old 11-19-2017, 03:45 PM
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en bloc en bloc is offline
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Join Date: Feb 2011
Location: Shenandoah Mountains, VA
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en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
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Quote:
Originally Posted by MAT52 View Post
Well I really hope that this works out somehow for her and maybe, selfishly, I too might benefit. Also I’ve just learned from someone that Addenbrookes Hospital in Cambridge - are looking for people with autoimmune neurological problems to trial IViG on I think. I will message Joanna about this. It’s too far away for me to benefit from but I plan to tell my neurologist about all this on Wednesday and hope she doesn’t do what everyone else has done so far and look at me with total disbelief and poo poo the idea.
flatly. It’s clearly all about money and us not being a priority. If they concede that IViG or Biologics might help us then that’s a very expensive concession so it’s easier for them to lie and say there’s no evidence that it will work and make me feel like a numpty for even suggesting it as a possibility for treating SFN!
If they are doing a trial, then they obviously know the benefits!! Maybe even if you can't get on this trial, it will still open doors for you down the road with their results of the trial. Stay in contact with them about the trial...so you have any info about the results, etc.
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