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Old 02-06-2019, 03:01 PM   #11
LouLou1978
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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
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.
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Old 02-06-2019, 03:45 PM   #12
Stickywicket
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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.
Iíve 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 canít find a cause.

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

SW xx
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Old 02-06-2019, 03:52 PM   #13
LouLou1978
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Iíve 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 canít find a cause.

Itís 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.
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Old 02-07-2019, 03:04 AM   #14
Stickywicket
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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 Iíve hardly moved for ten months as itís 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
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Old 02-07-2019, 06:23 AM   #15
glenntaj
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Default 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.
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"Thanks for this!" says:
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Old 02-13-2019, 07:43 AM   #16
LouLou1978
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--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.
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Old 06-16-2019, 10:46 AM   #17
Val123
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Default 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.
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