SF-Non length dep. w/o sensory loss......
 

Do any of you have small fibre non-length dependant neuropathy with only positive abnormal sensations?

I have pin pricks, water feelings, buzzing, all over body 24/7, but no sensory loss at all. I am on 900 mg/Gabapentin, but lately having more and more "breakthroughs."

I also have a lot of muscle jumping, not cramping and no weakness.

I have had every test known to man to r/o disease of CNS.

Dr. said he can't even confirm neuropathy w/o loss......

I am starting to feel like a freak of nature.

You will see my posts on Fibromyalgia and Chronic Pain posts also...........trying to fit in somewhere.

That description--
 

--is pretty much mine, with the addition of acute onset (spreading in hours, all over my body in days). I never had any numbness or sensory loss, but a lot of burning, dysethetic pain, prickiling, electrical jolts, sensations of things that weren't really there, etc.

I will say that I also have some spinal compression problems with cervical nerve roots, and the sensations that causes can include some numbness, but those symptoms are correlated with degree of compression and muscle positioning and are of a fundamentally different sort than my small-fiber ones.

I don't know what kind of neurologist you have that can't confirm neuropathy without sensory loss--positive symptoms are as prevalent as negative ones in small-fiber neuropathies and in neuronopathies (which involve toxic or autoimmune attack on the dorsal root ganglia, which can extend to small fibers).

Refersh my memeory--have you had skin biopsy to confirm small fiber disruption? Other testing?

Too many neuros who don't specilize and don't know think that neuropathy only occurs in individual nerves post-trauma or slowly in a glove and stocking distribution--it's prudent to remind them about Gullain-Barre and other more global, acute onset conditions. Link them to this:

http://neuromuscular.wustl.edu/time/...htm#neuropathy

And that goes for me, too.

What glenntaj has described is pretty much me, and it happened almost the same way in January. The exception for a few months were the hands and feet, but they finally got into the act. So that stocking-glove thing isn't written in stone by any stretch.

My sensory neuropathy is very slight, but there. It's all the rest of the stuff described by both of you.

What's really weird is that I had 48 hours of no symptoms to speak of at the end of last week, sudden onset of "normal." They came back gradually as of last evening, but more mildly.

I have been told by all four neuros, two at one pinnacle facility in Cleveland and two at the other one that my case is "unusual." It sure is.

SheltieMom,

I was diagnosed Cleveland Clinic with SFN (from nerve biopsy)as well, but I suspect there is long fiber involvement as well. Also said I have a vestibular problem(still investigating), something neck related and some possible degenerating discs(they retracted or downplayed that after a second MRI).


Can you think of any activities/food/drink prior to your recent bout that might have precipitated it? Laying on my stomach, leaning over in a chair, looking down to read, craning my neck to hard left, twisting my torso while keeping lower body steady. Spending time or wearing out these positions will start it up. It would be great if we could do mass surveys and look for correlations based upon this data. Might find some interesting stuff to help people.

Thank you for your replies. I have had MRI's, spinal tap, a lot of blood work and 2 EMG's by neuro. I did not have skin biopsy test, he told me it wouldn't change my treatment (Gabapentin).

The part that worries me the most in non-length dependent is progression. In length dependent (distal neuropathys) people get progressively worse, the burning can affect them to such a degree they feel as though they have to stick their feet in ice water and can't wear shoes. Where does that leave us with non-length dependent............our whole bodies are affected!!!

Are yours idiopathic or caused by a systemic or auto immune illness?

What meds seem to be the best in symtomatic relief?

As said many times before, cannot tolerate the gapapentin, Lyrica, Pamelor etc. meds even at low doses.

Therefore, must rely on the supplements as recommended here and gradually eliminating the different gluten foods. Don't know if one or either of these attempts will ever kick this thing in the slats for good, but worth a try.

Non-length dependent is rare, but so far have not found that mine has gotten worse - if anything, better than it was. But what a wacky thing this is! Never could have imagined such a thing existed.

same as you
 

my SFN is related to toxins. It is more or less stable, but as having differant kinds of impaired sensation - it is really difficult to say. One day - is is seems that everything is gone but the other day - burning all over. Not taking any meds, but supplaments as recommanded here and hope for good.
As we aged - we get many other things that confused and change the picture and sometime it is very difficult to point what is the cause.
(remember - English is not my lenguage...)
SFN is rare - but according to my neuro - there are more people with SFN - but the are not DX. I believe him. I know what I did during the last 5 years in order to be DX and didn't get "it is in your head" as an DX.