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Peripheral Neuropathy?

Stone

Senior Member
Messages
371
Location
NC
I'm just wondering if many of us have had peripheral neuropathy or neuropathies? HIV does cause peripheral neuropathy in some people and I'm wondering if there are any CFS sufferers besides myself who experience peripheral neuropathy possibly in connection with their CFS (or possibly their XMRV)?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Stone,

I have been diagnosed with peripheral neuropathy in my feet. It might or might not be CFS related. I do not know if I am XMRV+. I suspect it is more from muscle damage in my feet, and that is CFS related. I also have lots of microbruising under the skin in my feet, making them brown (no, this isn't Addisons, its only my feet). Plus I have highly swollen nodes on my feet, but this might be medication related.

On the other hand, I qualify for almost every diagnostic definition for ME and CFS, so I am a good candidate for XMRV.

Bye
Alex
I'm just wondering if many of us have had peripheral neuropathy or neuropathies? HIV does cause peripheral neuropathy in some people and I'm wondering if there are any CFS sufferers besides myself who experience peripheral neuropathy possibly in connection with their CFS (or possibly their XMRV)?
 

dsdmom

Senior Member
Messages
397
I have small fiber/autonomic neuropathy, diagnosed by an autonomic specialist. I do not know if I am xmrv+. My dr has always felt that the damage was caused by some sort of infection - either viral or bacterial. It has improved a bit with time, especially since for awhile the autonomic neuropathy completely inhibited my ability to sweat and now I sweat again.
 

leaves

Senior Member
Messages
1,193
i m xmrv+ and have often numbness in legs and arms, I also move hands and arms and legs involuntarily. Think this is nerve related. Oh and I rarely sweat.
 

Stone

Senior Member
Messages
371
Location
NC
Yes, me too, but I also have a situation with crazy profuse soaking sweats the instant I fall asleep, or sometimes while falling asleep, often accompanied by a sharp drop in my blood sugar. It's bad enough to wake me up and it started around the time the neuropathy did, and I've also been losing weight without trying. 20 lbs in 6 months while laying in bed and almost not walking at all. No, I do not have diabetes. Interesting that you mentioned the two things in connection with each other. Hmmm. *Do you smell something burning? It's just my brain trying to think, that's all*
 

Emootje

Senior Member
Messages
356
Location
The Netherlands
Hi Stone.
I've got a strange kind of neuropathy. It's a burning sensation in my face, when I'm exposed to cold the burning sensation gets worse (cold allodynia). When my skin is exposed to water, the neuropathy is also worse (aquadynia). This symptom surfaced at the same time my other CFS-symptoms began. Some natural anti-inflammatory agents diminish the neuropathy, for instance vitamine D, green tea extract, selenium and alpha-liponic acids. These agents block Nuclear Factor Kappa Beta (inflammatory agent that is increased by infection/inflammation). I'm not yet tested for XMRV, but I definitely think there is a link between chronic inflammation and neuropathy.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Leaves, google paroxysmal dyskinesia and see if this is what you get. It is difficult to tell from a post as people talk about movements but mean different things.

I have kinesic and dyskinesic PD, there is a third but I have forgotten what it is, memory....

I know of a few people with ME who have this. I also became friendly with a woman with MS who had it as well. We would shake in unison :Retro smile: It is not the usual movements of MS.

She was told by her consultant that it is usually a genetic disorder. His theory was that if someone was genetically susceptible a neurological disease could tip them over.

I take baclofen which has made it possible to actually feed myself again and gabapentin which has helped too.

Mithriel