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Old 02-05-2019, 01:21 PM   #1
Stickywicket
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Default Sensory ganglionopathy

Hi Iím 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(Iím in uk) is opposed to ivig his excuse is of the side effects it can cause but I think itís down to cost. Has anyone any advice they can give me please as I am at my wits end as I know I wonít 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 Iím still waiting on an answer. Iím hoping maybe some of you are on meds that I havenít trialled incase ivig does get stopped altogether. Thanks for taking the time to read my post.

SW xx
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Old 02-05-2019, 02:03 PM   #2
kiwi33
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Hi Stickywicket

Welcome to NeuroTalk .

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

Best wishes.
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Old 02-05-2019, 04:12 PM   #3
LouLou1978
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Originally Posted by Stickywicket View Post
Hi Iím 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(Iím in uk) is opposed to ivig his excuse is of the side effects it can cause but I think itís down to cost. Has anyone any advice they can give me please as I am at my wits end as I know I wonít 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 Iím still waiting on an answer. Iím hoping maybe some of you are on meds that I havenít trialled incase ivig does get stopped altogether. Thanks for taking the time to read my post.

SW xx
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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Old 02-06-2019, 02:20 AM   #4
Stickywicket
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Originally Posted by kiwi33 View Post
Hi Stickywicket

Welcome to NeuroTalk .

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

Best wishes.

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 havenít 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 itís going to be taken away again.

SW xx
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Old 02-06-2019, 07:41 AM   #5
Stickywicket
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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 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 itís 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 Iím 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 Iím 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 doesnít even get the same relief as I do. You can see the predicament Iím 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 donít think I would have a problem. Thanks again for reply.

SW xx
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Old 02-06-2019, 12:31 PM   #6
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Originally Posted by Stickywicket View Post
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 itís 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 Iím 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 Iím 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 doesnít even get the same relief as I do. You can see the predicament Iím 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 donít 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.
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Old 02-06-2019, 12:34 PM   #7
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Originally Posted by Stickywicket View Post
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 itís 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 Iím 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 Iím 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 doesnít even get the same relief as I do. You can see the predicament Iím 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 donít think I would have a problem. Thanks again for reply.

SW xx
Meant to ask, have you had lip biopsy to rule out Sjogens?
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Old 02-06-2019, 01:32 PM   #8
Stickywicket
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Originally Posted by LouLou1978 View Post
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 thatís helped over the years. My new neurologist is not supportive as heís made it plain I should never have got the treatment in the first place and he says Iím psychologically dependant on ivig which is utter rubbish he canít answer me when I question him whatís going to happen next thatís why I came on to this sight to see if there was anything that Iíve never heard of to try as I couldnít go through the rest of my life in so much pain as Iíve been in past ten months.

So what is the institute doing for you and your family member? What tests have you got done? Iíve never heard of the genomes Project what exactly is it?

SW xx
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Old 02-06-2019, 02:15 PM   #9
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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 thatís helped over the years. My new neurologist is not supportive as heís made it plain I should never have got the treatment in the first place and he says Iím psychologically dependant on ivig which is utter rubbish he canít answer me when I question him whatís going to happen next thatís why I came on to this sight to see if there was anything that Iíve never heard of to try as I couldnít go through the rest of my life in so much pain as Iíve been in past ten months.

So what is the institute doing for you and your family member? What tests have you got done? Iíve 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?
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Old 02-06-2019, 02:39 PM   #10
Stickywicket
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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 theyíll eventually find out whatís causing your sfn and thatís 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 heís stopped sending patients to him and Iím sure itís 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 Iíve got to be wrapped up like a mummy when I go outside.

SW xx
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