Interesting amall Johns Hopkins study on SFN nerve damage.
 

Had this link in my inbox this morning. Thought it was an interesting read.

"Small nerve fibers defy neuropathy conventions"

http://medicalxpress.com/news/2016-0...europathy.html

"Initially, he says, all patients with small fiber neuropathy had fewer nerve fibers at the test site on the ankle compared to the upper thigh, demonstrating more nerve damage the further down the leg measured. After three years, all three groups of those with small fiber neuropathy lost nerve fibers at the site tested in the ankle. But what surprised the researchers was that nerve fibers were lost at similar rates from the lower and upper thigh sites as well, a phenomenon that would not have been expected if the longest nerve fibers were the most vulnerable."

Thanks Janie!
 

I think I will share this study the next time I go see a neurologist, making sure I highlight the following part by senior author Michael Polydefkis, M.D., professor of neurology at the Johns Hopkins University School of Medicine and director of the Cutaneous Nerve Lab:

"I liken small fiber neuropathy to the canary in the coal mine," "It signals the beginning of nerve deterioration that with time involves other types of nerve fibers and becomes more apparent and dramatically affects people's quality of life. The results of this new study add urgency to the need for more screening of those with the condition and faster intervention."

Perhaps the doctor will think twice before dismissing me and telling me to just take more meds for my symptoms. One can always hope....

I agree with what they said in the study about "faster invention" is needed but what exactly does that mean because in most instances they don't even know what the cause is? I suppose they are saying diabetec med's and diet are needed right away even if one is pre-diabetic? And is the medical community at large going to start screening pre-diabetec patients by ordering skin biopsy's to see if there's any loss of small fibers? I have been pre-diabetec for 5 years and if I had any idea that I was at higher risk of SFN I certainly would have done something long ago. I never even heard of SFN until I got it. My doctor kept saying no worries you don't need med's because you're not diabetic. I think there's a big need of public awareness of the higher risk of SFN due to diabetes.

Cliffman

Dear Cliffman:

faster intervention.

Intervention for the majority who are diabetic means rigid control of blood sugar levels through medication, weight loss and exercise.

There is almost NEVER an "intervention" for those of us with NON DIABETIC idiopathic peripheral neuropathy as well as SFN

Hugs, ElaineD

Maybe I am misinterpreting what you're saying (and I apologize, if this is the case), but there IS intervention for PN & SFN in many with autoimmune disease or other conditions...if they use IVIG. Some with idiopathic, may have autoimmune based neuropathy and its just undetected yet (due to sero-negative labs). Of course many medications used for PN & SFN just mask symptoms and reduce pain, but IVIG is well documented to increase nerve fiber density and improve the condition of the actual fibers.

Of course, this is to use IVIG in doses appropriate for neuropathy, not for PID.

Well, that all sounds promising! :eek::eek::eek::eek:

:confused:

Don't all people have fewer fibers the lower you go...ankles are lower than thigh?

Thanks

Mrs. D, do you know the answer to this? I couldn't find info online about it. Does everyone have fewer nerve fibers the lower down you go? Thank you.

If a person has an injury or mechanical reason for nerve damage at the thigh level, it will report as such.

I seem to recall a few posters posting here over the years
that their thigh report was lower than the ankle.

Also there are some primate studies showing that damage at
the dorsal roots along the spine, eventually show as loss of sensory fibers at the end points that those roots serve.

So it is possible that the thigh may test out lower under some circumstances. Everyone has slightly different nerve distributions too. For example, in acupuncture a nerve path listed on a diagram may be displaced slightly. Some sites blame this anatomical variation for acupuncture injuries.

Another example is MP(meralgia paresthetica). Some doctors blame an ischemic event (like a local blood clot) causing damage to the lateral femoral nerve. End stage MP becomes numb, so if a same is taken at that level of the lateral thigh, it may show fewer fibers correspondingly.

There is quite a bit of variance between people, of medical/biological issues. So nothing can be 100% the same. ;)

I may be an outlier but my proximal thigh biopsy had fewer nerve fibers than my ankle. I don't know what that means though. And I also feel for us "idiopathics" there is no early intervention. That's the scary part.....feel like I am sitting & waiting for something happen.

Summerfun,

That means that your SFN is called non-length dependent. Patient with this type can have neuropathy anywhere...even the face or trunk. Most patients with this type have idiopathic SFN.