Quote:
Originally Posted by Stickywicket
Hi Loulou
That must be quite exciting for you being a new project although going to take time to get results hopefully they’ll eventually find out what’s causing your sfn and that’s great to know you have ivig on standby if your symptoms get worse also good to know your sister has no longer any symptoms.
My new neuro is not a fan of Prof Anand as he made it plain he’s stopped sending patients to him and I’m sure it’s all to do with ivig. Amitriptyline was one of the first meds I ever tried when my condition was nowhere near as bad as it is now, there is I only one other person in Scotland that I know of that has this and we are in contact they are the same no neuropathic drugs has helped them either the only thing that does is ivig it also dampens down sensitivity as well I have got to have my house like a sauna as the cold flares me up I’ve got to be wrapped up like a mummy when I go outside.
SW xx
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How long have you had symptoms for? Mine has been about 7 years. My neuro was the one that got ivig through, I've been really lucky. prof Anand didnt recommend for me but did for my sister. She didn't bother as hers doesn't affect her, she has also had it for 7 years, I think sometimes it's environmental, something we have both had contact with.
02-06-2019, 04:01 PM
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