Quote:
Originally Posted by LouLou1978
Hi , I am in the UK too. I was offered a trial of IVIG on the NHS, I haven't actually had it as my symptoms improved and have minimal burning. I have tried a 5 day steroid infusion but didn't help. Mine is idiopathic. Do you know what has caused yours? You have been lucky to get IVIG, most people don't get it here in UK for SFN.
Regards Loulou
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Hi Loulou thanks for reply. You say your symptoms improved was that with medication or naturally? What meds have you been on?
I have horrific throbbing burning pain and nerves fire off big time all over my body it’s like electrical shooting pains I was trialled on a number of things up until seven years ago when I got ivig it doesnt take pain away completely but dampened it down by about 70% which let me have a life. My consultant(of two years) is not very supportive and said I’m psychologically dependant on ivig which is a lot of rubbish he said I should never have had it in the first place why then did nothing help long before I had ever heard of ivig. As far as I’m aware there are only two of us in Scotland with this diagnosis the other person has a different consultant and was restarted on treatment seven months ago and gets reviews every three months and doesn’t even get the same relief as I do. You can see the predicament I’m in and grasping at straws to see if there is anything else anyone knows of that I could try, if I had a supportive consultant I don’t think I would have a problem. Thanks again for reply.
SW xx