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.

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

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?

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

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.

I’ve had symptoms for about twenty years it started with a tingling in my hands it slowly developed into throbbing burning pain it then progressed to my feet then my face and my trunk and then in legs and arms a few years ago my nerves started firing off with electrical shooting pains and sensitivity got worse, since the ivig was stopped ten months ago it has shown it has progressed a bit more which the ivig has been masking. They can’t find a cause.

It’s all possible it could be environmental What are your symptoms and what did they start with?

SW xx

Started off with strange feelings in feet ,knees and fingers, crawling, hot feelings, waterdrop feelings, no pain, pain started only for 4 months after severe stress with diagnosis, sister never had pain, Just odd feelings. Hers has completely gone. Im wondering if its something environmental with my home, as hers has gone. Sounds awful to have for 20 years, do you get any weakness? I cant believe thry took ivig awsy if it took 70% of psin away, its ridiculous.

Im interested to read these posts made a few months ago. I started with symptoms of peripheral neuropathy 16yrs ago and sensory ataxia 5yrs ago. I cant walk in darkness, on uneven ground or up or down stairs without a rail. My balance is the problem. The neurologist from Walton Hospital Liverpool now tells me I have sensory ganglionopathy. I have had all routine tests and my neuropathy is considered idiopathic. I know of noone from my family but I was told it may be the result of recessive genes from my parents. Ive been offered no treatments, only physiotherapy and options for pain relief. The consultants Ive spoken to over the years have mentioned iv treatments and steroids but considered them to have potentially serious side effects with little chance of success and Ive believed them. Fortunately my burning stabbing nerve pain is manageable because its random and sporadic and doesnt justify me taking a drug like gabapentin every day. My main fear is the loss of my mobility having been told I will need a wheelchair as this condition progresses.I no longer go out once its dark and Im losing my confidence and independence. Im surprised that the posters have not mentioned their mobility problems. Id be interested to hear how you posters are coping with this.