[Synnove]

Hello.

I just want to report some new information regarding skin biopsy for SFN.

I spoke to a clinical representative from the Therapath lab today, and he told me some news from the research and development. They have done research, and now have come up with a new skin biopsy test where the arm can be used as site of the biopsy. This test will be offered by Therapath in about 2 months.

The reason for this research was to offer a diagnostic tool to many patients that have symptoms involving the upper extremities rather than the lower.

Synnove

[glenntaj]

--Johns Hopkins foremost among them--that have at times taken a sample from the skin right above the elbow, as there were some "norming" studies done on intraepidermal nerve fiber density at this location (again, at Hopkins).

Most centers had not bothered with this as they generally treat small fiber neuropathy as a slowly ascending, distal to proximal progressing condition that will impact feet and legs first. It is worth noting, though, that while this is the most common presentation, there are others, including those that impact the upper extremities or even the trunk and face, so it is good to see that samples from places other than the leg will be more widely used.

[Synnove]

Glenntaj, thanks for the reply.

I think I might have both length dependent and non length dependent neuropathy.
My neuropathy did not start in distal feet. I actually think the first sign was a diffuse, whole body fine vibratory feelings in cutanous tissue.

The next symptom was a vibratory feeling in mouth and lips.

Then I had urology problems such as neurogenic bladder.

I had Brachial plexus neuritis 2 years ago with extreme pain in arm muscles to the point I could not lift my left arm. I needed steroids and Percocet.

I also have cervical spondylosis and cervical herniated C 6 - 7
accompanied by left arm radiculopathy with pins and needles, tingling electrical shock like symptoms;

Then about 1 1/2 years ago the neuropathy symptoms started to really "BLAST"
with a burning feeling in cutanous tissue all over as well as mucous membranes.

Fallowing this was intense burning in feet, especially sole of feet and palms of both hands.

I have compression neuropathy such as carpal tunnel syndrome this was just diagnosed 1 year ago with EMG.

There are also long fiber, mostly sensory neuropathy in legs confirmed by EMG.

So this is the reason I am trying to find out what test I could have to establish SFN.
I already had skin bx of leg which came out negative. And this is difficult to understand , since I have horrific symptoms.
I am reading in a book by Dr. Norman Latov "Distal or length dependent polyneuropaties rarely affect the face or trunk unless the neuropathy is severe." ( these nerves are shorter}
I have had numbness and pain in my gums at the same time as the burning pain in face and scalp. I also have had twithing of left lower lip for 6 months or so.

At this point I feel I have "come to the end of my rope". I have seen several neurologists, have gotten diagnosis like Sensory motor polyneuropathy.
And the same neurologist said I had SFN as well" mostly affecting sympathetic.

I am tired of searching and looking things up.

I have gotten a new neurologist that I hope will help with further dx, due to the fact that I have several neurological condition.
I think he has ordered new nerve testing in form of NCS EMG and Evoked potential.
What other neuro test should I ask for??? ( my rheumatologist is actually the only one that is treating me now. She periodically does blood test for other autoimmune disorders (I already have RA, OA and vasculitis)

Thanks for reading
Synnove

[glenntaj]

--is a good idea, as in ambiguous cases it may distinguish symptoms arising from the central nervous system from those arising int he peripheral nervous system (it is often used to help diagnose multiple sclerosis, for example, in those with inconclusive MRI or lumbar puncture test results).

It is certainly possible to have both large and small fiber neuropathy at the same time--mixed types often point to a more systemic autoimmune, toxic, or nutritional cause, though compressive effects can certainly exacerbate the symptoms (as in the "double crush phenomenon").

Another possibility (common in Sjogren's, for example, though many cases are idiopathic), is neuronpathy. a sort of subset in which the cell bodies in the dorsal root ganglia are compromised, and this can have both large and small fiber components:

http://neuromuscular.wustl.edu/antib...uron.html#sfsn

[ger715]

Originally Posted by glenntaj

--is a good idea, as in ambiguous cases it may distinguish symptoms arising from the central nervous system from those arising int he peripheral nervous system (it is often used to help diagnose multiple sclerosis, for example, in those with inconclusive MRI or lumbar puncture test results).

It is certainly possible to have both large and small fiber neuropathy at the same time--mixed types often point to a more systemic autoimmune, toxic, or nutritional cause, though compressive effects can certainly exacerbate the symptoms (as in the "double crush phenomenon").

Another possibility (common in Sjogren's, for example, though many cases are idiopathic), is neuronpathy. a sort of subset in which the cell bodies in the dorsal root ganglia are compromised, and this can have both large and small fiber components:

http://neuromuscular.wustl.edu/antib...uron.html#sfsn

I know you are quite informed on PN; tests, etc., but have wondered, unless needed for disability; what is the advantage of these tests?

I had spinal fusion/laminectomy L4-5 about eight years ago. Still dealt with considerable pain. After my bladder surgery, I was prescribed and took Levaquin for 14 days. Within a week or so after surgery, edema, then stasis dermatitis, followed with the burning feet/ankle, as well as leg pain and heaviness; adding additional lower spine pain.

Both my PCP and PM doctors feel I am definitely dealing with neuropathy. I am currently (also had various spine injections) on heavy narcotics to keep the 24/7 pain tolerable.

Again; looking for your input regarding the advantage, if any, to have tests to determine whether small fibre neuropathy; etc. would have. Seems the type of pain experienced is pretty indicative of dealing with neuropathy.

Thanks,

Gerry

[en bloc]

I know you asked Glenn, but wanted to pipe in with a reply.

The skin biopsy can document the PN for not only disability benefits, but more importantly, treatment options. Yours seems to be toxic in nature from the Levaquin, but many suffer this as a result of autoimmune disease (like Sjogren's) or other conditions where high dollar treatments are the only and/or best option...like IVIG. Insurance requires this type of documentation for approval of these treatments.

The test can also be used to gauge progression of the condition or improvement as the test can be repeated to see if density percentages have increased or condition of the fibers, itself, improved.

So, all in all, a very important test with both short term and long term qualities.

[Synnove]

glen,
I have a MRI (brain) with lesions suggesting MS, I have a LP negative for same.
Also aded on trouble is the PN.
Thanks for the neuromuscular link.

enbloc
I agree regarding the diagnostic importance of this tool (punch skin bx for SFN )
For me, it will help in treatment for the underlying cause of the SFN ( which I know I have big time)
It will also help the treating doctors in proving their case to the insurance companies to get coverage for their patients for very expensive medications.

My rheumatologist wants to treat me with Rituxan infusion, for example.

thanks for reading
Synnove