Quote:
Originally Posted by LouLou1978
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.
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Hi Loulou
Firstly yes I have had lip biopsy done(left me with partially numb lip) which came back borderline positive and recently repeat ana and ena were negative so Rheumy has ruled out Sjogrens. I have been on steroids for another condition which did nothing for the neuropathic pain so there was no point in trying iv steroids. My last neuro was brilliant and it was him that sent me to see Prof Anand at Hammersmith who suggested ivig and I got a skin biopsy done so between that and other tests and where it all started(in my hands) my neuro at the time diagnosed me with the sensory ganglionopathy and applied for ivig which has been the only thing that’s helped over the years. My new neurologist is not supportive as he’s made it plain I should never have got the treatment in the first place and he says I’m psychologically dependant on ivig which is utter rubbish he can’t answer me when I question him what’s going to happen next that’s why I came on to this sight to see if there was anything that I’ve never heard of to try as I couldn’t go through the rest of my life in so much pain as I’ve been in past ten months.
So what is the institute doing for you and your family member? What tests have you got done? I’ve never heard of the genomes Project what exactly is it?
SW xx