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02-06-2019, 04:01 PM | #11 | ||
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02-06-2019, 04:45 PM | #12 | ||
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It’s all possible it could be environmental What are your symptoms and what did they start with? SW xx |
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02-06-2019, 04:52 PM | #13 | ||
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02-07-2019, 04:04 AM | #14 | ||
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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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02-07-2019, 07:23 AM | #15 | ||
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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. |
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"Thanks for this!" says: | ger715 (02-07-2019) |
02-13-2019, 08:43 AM | #16 | ||
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06-16-2019, 10:46 AM | #17 | ||
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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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