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Neuropathy

PostPosted: November 22nd, 2014, 4:33 pm
by Scboy
Does anyone get neuropathic symptoms all over their body? My legs ache coatantly a I get burnng pains all over like a sun burn. Kind of scary sometimes.

Re: Neoropathy

PostPosted: November 22nd, 2014, 5:10 pm
by LKP1231
No burning but constant aching in the legs :(

Re: Neuropathy

PostPosted: November 23rd, 2014, 5:39 pm
by Jayden
Lol...I do have neuropathy , so I know how it goes.

Re: Neuropathy

PostPosted: December 3rd, 2014, 5:24 am
by raindog
This will apply to some of us may have ongoing but mild denervation as its stating that the sprouting of new nerve fibres is the actual cause of the pain. In MND / ALS there is no longer sprouting of new nerve fibres just death so that is why many with MND dont complain of the burning stabbing pain like some here get 24/7

http://www.news-medical.net/news/201208 ... awson.aspx

Re: Neuropathy

PostPosted: December 8th, 2014, 3:14 am
by Rages
I've got neuropathic symptoms only on the right side of my body (right leg and arm) for the last 8 months.

Do you ever heard about fybromyalgia ? I'm wondering if my problems and pains can come for this syndrom.

Re: Neuropathy

PostPosted: December 8th, 2014, 9:21 am
by leaflea
My main symptom in that area is ice cold hands and feet, not so much burning but maybe that feeling as I get the hands and feet to warm up

Re: Neuropathy

PostPosted: December 10th, 2014, 9:53 am
by Scboy
raindog wrote:This will apply to some of us may have ongoing but mild denervation as its stating that the sprouting of new nerve fibres is the actual cause of the pain. In MND / ALS there is no longer sprouting of new nerve fibres just death so that is why many with MND dont complain of the burning stabbing pain like some here get 24/7

http://www.news-medical.net/news/201208 ... awson.aspx


Thank for the info Raindog. I have been taking gabapentin 300mg at night. It helps but I wonder if it makes it worse when it wears off the next day. I really don't want to take much as the it may be part of the problem. I'll never know until I'm off of it. Do you have any treatments you use?

Re: Neuropathy

PostPosted: December 22nd, 2014, 4:16 pm
by raindog
Scboy wrote:
raindog wrote:This will apply to some of us may have ongoing but mild denervation as its stating that the sprouting of new nerve fibres is the actual cause of the pain. In MND / ALS there is no longer sprouting of new nerve fibres just death so that is why many with MND dont complain of the burning stabbing pain like some here get 24/7

http://www.news-medical.net/news/201208 ... awson.aspx


Thank for the info Raindog. I have been taking gabapentin 300mg at night. It helps but I wonder if it makes it worse when it wears off the next day. I really don't want to take much as the it may be part of the problem. I'll never know until I'm off of it. Do you have any treatments you use?


Yes, i use a vapouriser and cannabis ..it works really well with pain and cramping and this has enabled me to get at least 4 hours of undisturbed sleep. Unfortunately i can only use it before bed as i need to be able to function normally through the day. I know it works as the pain and cramping come straight back once the effects of the Cannabis as worn off usually at dawn. :?

Re: Neuropathy

PostPosted: December 22nd, 2014, 4:22 pm
by trustme78
I get the burning all over my body. Did you get diagnosed with neuropathy? I ask because I suggested that to my neurologist and she brushed it away based on my sympthoms.

Re: Neuropathy

PostPosted: December 23rd, 2014, 1:43 am
by Xina535
First time I read that denervation can cause the "pain".

Does it cause only burning/stabbing type pain or also aches/soreness (like as if you have a bruise and go to touch the muscle and it hurts more by touch)?

Re: Neuropathy

PostPosted: December 23rd, 2014, 2:00 am
by Xina535
Oops sorry, just saw and read the article, that talks about different qualities of pain. Thanks for posting that!

Stupid questions: this sensory stuff points away from MND. But, twitching in ALS is caused by motor nerve denervation, so does that mean neuropathy and when the article mentions denervation, that means sensory nerve denervation? Would sensory nerve denervation or this "excitability" cause twitching, along with the tingly feelings and pain?

Re: Neuropathy

PostPosted: December 23rd, 2014, 9:55 pm
by Scboy
No I have not been diagnosed with neuropathy, but I have neuropathic pain. I'm seeing an autoimmune specialist at Duke University for evaluation end of December,

Re: Neuropathy

PostPosted: December 28th, 2014, 8:06 pm
by Jenna
Scboy, you read my post from the other day. Your description is exactly how I described my burning sensation, feels like a sunburn. I haven't been diagnosed with neuropathy either. Besides seeing a neurologist, I've seen a rheumatologist who said he was going to test me for "every" autoimmune disease. Everything he tested for was negative.
The burning is horrible and makes it hard to function. I take four Gabapentin per day (1200 mg). I am so thankful for this medication.

Re: Neuropathy

PostPosted: December 30th, 2014, 9:34 pm
by Scboy
I may give Gabapentin a try in a couple months. I want to be off all meds to see what my baseline is. I seem to be getting a little better. One other development for me is I think I have discovered I have a sensitivity to salicylates. I got bad flushing with peppermint candy, cranberry juice and wine. Dr said likely intolerance to salicylates. Could be aggravating my problem. Really unfortunate cause salicylates are in so many foods. Going to do an elimination diet for a while.