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Originally Posted by Stickywicket
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
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Hi there,
I haven't had a diagnosis of sensory ganglionopathy, but I have non length dependent SFN diagnosed in 2014. The pain of it actually came on with the stress of the diagnosis, it lasted 4 .in the and gradually went away, it turned out another family member had it too, we were told genetic and went to Oxford for genetic testing, it came back negative, we are now on the 100,000 genomes project, symptoms are more or less the same .. have you tried steroids? I'm under National Hospital for Neurology in London otherwise I would have had no chance of anyone doing anything.