Sensory ganglionopathy
 

Hi I’m new here can people tell me what they get for this condition please. I had been getting ivig for six years after a variety of medications that I was trialled on failed to help my pain. Ten months ago it was stopped supposedly because of a shortage I was then trialled on some combinations of meds I had been on before again they did nothing. It was Reapplied for and it was granted for three months and I have to be totally pain free which I never was before but pain was bearable and I was able to have a life. The consultant I have(I’m in uk) is opposed to ivig his excuse is of the side effects it can cause but I think it’s down to cost. Has anyone any advice they can give me please as I am at my wits end as I know I won’t be able to cope with horrendous pain for the rest of my life. I did ask consultant what he would do if it was stopped again and I’m still waiting on an answer. I’m hoping maybe some of you are on meds that I haven’t trialled incase ivig does get stopped altogether. Thanks for taking the time to read my post.

SW xx

Hi Stickywicket

Welcome to NeuroTalk :).

My understanding is that sensory ganglionopathy can be associated with autoimmune diseases like Sjögren’s Syndrome, Autoimmune Hepatitis and Celiac Disease. This might be worth discussing with your doctors.

Best wishes.

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

Hi Kiwi 33

Thank you so much for your reply and your kind welcome. I have been tested for Sjogrens and that has been totally ruled out, hepatitis and celiac I haven’t been tested for so maybe worth pursuing. My head is all over the place at the moment having been given my life back for three months and then it’s going to be taken away again.

SW xx

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

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.

Meant to ask, have you had lip biopsy to rule out Sjogens?

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.

In the early days when it started in my feet i felt as if there was something crawling in my feet then after a while the burning took over. At the moment I have weakness but I’ve hardly moved for ten months as it’s been to painful so muscles will be weak.

Have you asked you neuro if they think it could be anything environmentally? Have you been tested for any other underlying causes?

SW xx

A few things for you both to look at--
 

--to see if anything looks familiar or matches up:

Sensory Neuronopathies

HSN

Hereditary Motor Sensory Neuropathies: Charcot-Marie-Tooth

The Washington University neuromuscular database is probably the most comprehensive in the world as regards particular neuromuscular syndromes and their causes/symptoms.

Thank you Glen, I have had a look at the heriditary neuropathies but they don't seem to fit, mine is full body not just feet, I think the genetic ones seem to be more feet and hands. The Oxford professor I saw thinks a sodium channel mutation which hasn't been identified yet. I think the above conditions you mentioned maybe part of the panels I'm having tested under the genomes project. I'm still waiting to hear.

mobility problems
 

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.