Quote:
Originally Posted by LouLou1978
My sister does not get any symptoms anymore, it's weird, I do, but not painful burning. The genomes project sequences your whole genome looking for anomalies which may have caused the symptoms, it is a large new project, but results can take time. I have IVIG on hold, if symptoms get worse my neuro will use it. I was diagnosed by Prof Annand. I found with burning pain Amitriptyline was the best medication.Have you tried this?
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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