Hi - Liza Jane had mentioned in her recent thread that ataxia was being tested, etc... I'm confused I have seveve sensory PN, with autonomic and motor complications, and thus axaxtia - they are sure of the type of damage cause of my sural nerve biopsy of the prediominately large fiber loss and disporportionate loss of small fibers and nerve roots, it is exactly the physicial manisfestations they would expect to see . ... I was told the large fiber was the reason for the sensory and severe loss or propeciation (where my body is in space) and if Im not in the wheelchair or (rolling walker inside)- I stagger and fall all the time..... is something not making sense here? Do I need to get separate ataxia testing?????? Doesnt everyone who has sensory PN have ataxia????????

Made me look it up and do a 'refresher' on the terminology!
Best source was the now...good old Wicki...: http://en.wikipedia.org/wiki/Ataxia

Why was this source good? Because it didn't proclaim that PN/ataxias were all alcohol/drug overdose related!

And yep, I do have a very solid dose of 'Ataxia' I guess! I must, because the docs are always almost unable to catch me when I close my eyes. It's been a true game of 'trust me' [NOT!] when doing this for sure. I even get a sort of 'vertigo' with my eyes open in certain places - that IS scary!

I exercise to strengthen ankles [my weakest part] with a thera-band when sitting, and will kind of do a rocking alternating foot thing when standing in lines.

I've damage tho not as much as you, but the key part is what I call 'body-awareness' -where you MUST use your vision and anything else left and always THINK about where you are, and where you are going...even an uneven stone in a drive can be a killer when you're distracted and not paying attention. It takes a lot of effort and concentration to keep those FDGB's at a minimum [fall down go booms]. 's - j

When testing for ataxia (which I have - truncal ataxia especially severe though I have a more widespread ataxia as well) - anyway, the only direct testing for my ataxia I have is watching me walk/stagger around. They stand right behind me so they can grab me (no proprioception).

I don't think there is a particular test beyond the usual nerve studies or whatever else is relevant for the cause of the ataxia etc - the way I walk (bent forward 45 degrees from my hips) is just a function of my nerve damage so I can't see the point in tests for my ataxia. The ataxia is just a symptom of the lack of proprioception.

It's a bit like seizures. They ask for a description of my seizures, then do EEGs (epilepsy since birth). They don't test my seizures themselves (no idea how they would do that), as that is just part of my wonky EEG, they are just a symptom really. at least that's the way I see it and I think that ataxia is the same. Visualize, then test for the cause.

I fall when I have my eyes open - they have long since given up asking me to shut them ! I also have a lot of motor damage with my neuropathy, especially from my knees down (foot drop plus club feet caused my my motor damage).

hth

raglet

--will experience ataxia; it often depends on just what fibers are affected (and if there is any central nervous system component to the situation as well).

As the Wikipedia article indicates, ataxia can stem both from brain/cerebellular dysunction, and from peripheral sensory dysfunction--it can often be hard to tell apart centrally-based symptoms from peripherally-based ones (as it is with many neural symtpoms).

I do think an underappreciated origin for certain ataxic people is autoimmune attack--such a mechanism is at work in lupus-associated ataxia and in gluten ataxia (in this latter the attack is on the Purkinje cells of the cerebellum). Anyone whose neuropathy has an autoimmune component (which probably includes a lot of idiopathic people) should be aware of this possibility.

Thanks for the info - GLenn - is there any different kind of treatment for type of PN? Since I dont respond to auto-immune treatments the docs say its genetic - which would make it cerebellum and just live with it like forevever (actuLLY, the ataxia for me anyway is much easier to deal with then the autonomic symtoms - using assistance devices are not that bad)? I've done all the exercises for my ankles, legs, etc... but never make any difference - and my neuro has said theres absolutely no way to restore the nerve roots - so I guess thats the future.... thats all we need now - sub classes of sub classes of PN..... they offer me little hope actually - and right now I'm fighitng C-Diff for two months now on top of everthing which wont go away - and is making me weaker all the time (and continue to loose weight) - autonomic pluls C-Diff do not a happy camper make.... I hope those of us that can get maybe experimental care do - and maybe can help the rest us.....