Today my neuro doc called with results of skin biopsy , my ankle was fine but further up my leg skin biopsy showed demylanated sp? Problem that my Doc said is typical in autoimmune disease sjogrens. Now he wants me to have lip biopsy, I am so confused, first he thought I had CIDP, then idiopathic neuropathy, now sjogrens? I am going to UCLA to meet with a Neuro there, what questions should I be asking her? I am really really confused!!! Jan

Or, better yet, get a copy of the test results and tell us exactly what it says?

Reason I ask is that skin biopsy, as opposed to nerve biopsy, typically does not sample myelinated nerves; it generally samples the microscopic "free" nerve endings, the small unmyelinated nerves that subsume the sensations of pain and temperature.

On the other hand, NON-length dependent neuropathic patterns are typical of the neuropathy of Sjogren's and some other neuronopathies/ganglioneuropathies:


http://neuromuscular.wustl.edu/antibody/sneuron.html

Left Calf skin biopsy: skin with significantly reduced epidermal nerve fiber density, consistent with small fiber neuropathy results3.49 low normal 5.4- 5.7
Glenn that is how the report reads. Thanks for your comments. Jan

You should ask about checking labs for SSA & SSB (blood markers for Sjogren's). 40% of Sjogren's patient can have negative markers but should be checked. If positive though, it might save you the biopsy.

The lip biopsy isn't that bad. It's a small incision with local anesthesia. It can cause some very minor numbness in the area (which can be permanent). Do you have dry mouth and dry eyes? What about cavities (more then usual)? Any other unexplained symtpoms?

The SFN associated with Sjogren's is sometimes improved with IVIG, you should ask about this if the diagnosis is positive. One step at a time though. See if it's Sjogren's first.

Keep us posted.

Hi En Bloc,

I did have the blood test to check for sjorgens it was negative, I'm not sure I want to have lip biopsy, I hear it's painful and as you said could cause permanent numbness, I already suffer so much numbness, Can IVIG be used for sjorgens I have heard it's not used for this disease, my Doctor is talking about prednisone, but I have heard some bad things about that, also my sed rate is normal if I had sjorgens wouldn't that be abnormal? I'm headed to UCLA Medical center tomorrow, I am hoping they can shed more light on all of this. Thanks, Jan

The lip biopsy really isn't that bad (pain wise). I have some permanent numbness from it, but it's really a small area and not bothersome. Talk to them about what to expect.

IVIG is not FDA approved for Sjogren's alone and doesn't help with dryness issues anyway. The IVIG is helpful for neuropathy from Sjogren's and with a positive skin biopsy can easily be approved with most insurances. I did not find steroids to help my neuropathy pain (and mine is from Sjogren's) and I tried high dose IV (1 gram/day for 3 days) on several occasions over the last couple years.

so sorry to hear what i feel
don't know what to do anymore
never ever have i gone through what has happened
in the last 3 years
i would ask how is it possible to be diagnosed
with all that you have been told

be well
eva

Thanks for all your replies I sure appreciate all of you. I just got back from UCLA Medical and saw one of there top Neuro Docs, she was very kind and spent so much time with me, I have to tell you she was not impressed with my skin biopsy, she said that test is fairly new and has not proven to be all that accurate, she believes that I may have an autoimmune disease and is testing me accordingly, she also from all my tests and information says that this neuropathy may have been caused by a viral infection, but I do not have CIDP because my EMG'S are all clean. She is going to write a full report on my visit today and I will let you all know what it says, she wants me to change one of my medications,gabapentin, to cymbalta she said it works better than gabapentin, she also suggested acupuncture and rlypoic acid. Any thoughts are appreciated. Thanks, Jan

This is our recent discussion on r-lipoic acid.

http://neurotalk.psychcentral.com/thread159210.html

Select the "stabilized" form when you purchase it.
Many of us use Doctor's Best brand, found on the net.
iherb.com and some others. Look for "stabilized" on the bottle, as this form is the most absorbed and effective.

This sounds exactly what I have been through. I had the skin biopsy and was told I had small fiber neuropathy. Went to Hopkins they said no even though my results said yes. They think Sjogrens even though all of my test were negative. The Schmir's (eye test) was positive. I wonder though if that could be medication induced. Back to Pennsylvania neurologist (who by the way said his mother tested neg for it for 10 years and just tested positive). He sent me to Rheum who is not sure but said not only do I have SFN but I have fibro (I don't believe that). Now I am back to neuro who wants to do another EMG due to finding a change in my leg strenght. He is also considering a muscle biopsy. (unsure why). Him I trust has not steered me wrong once. He found my SFN in a few short months. I hear others wait many years.
I understand your confusion. I did find the lip biopsy to be painful after the novacaine wore off but it tolerable. AI appear to be a lot like you in my need for an answer to this but I ccam coming to realize that I have been tested for just about anything and the only thing found was SFN. They also say it is idiopathic and autoimmune probably from a virus.
My family doctor just told me two days ago that as far as medicine has come they are still stupid when it comes to Auto immuse diseases.
I will continue to look if I see something that might be related to me I will bring it to my neuro's attention. For now I am trying to focus on feeling better.
I do see an accupressurist and she helps a lot. If you are willling give it a try.
I also have been trying meditation and I believe it lowers my stress from the pain. I t took me a while to get to this point> I have had this for three and 1/2 yars. I hope this helps and makes sense. I am trying to do it quickly. My lunch just ended. Hang in there!