Yet another diagnosis I am so confused!
 

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

Could you be a bit more specific?
 

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

Test results
 

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.

Did you take prednisone what side affects if any did you have? I have Blue shield Insurance do you know if they approve IVIG, I'm sorry did you say you had IVIG? Did it help?

Did they test--
 

--and other areas besides the calf?

What you wrote is consistent, yes, with a small fiber neuroapthy, but it's hard to tell if it's length-dependent or not without a sample from closer to the body core. When my skin biopsies have been done, they've included samples from left calf near ankle, left outside thigh near hip, and left upper arm above elbow, and, at least initially, intraepidermal nerve fiber density was reduced at all locations. (I've gotten more skin biopsies since my initial acute attack in 2003 that have showed re-enervation; last one shows I am up to 11-th percentile of the normal range, and abnormal is normally defined as below the fifth percentile or above the ninety-fifth--a little arbitrary, as no one generally knows what his/her typical nerve fiber density was prior to having symptoms).

The contrast between calf and thigh is probably most indicative of length-dependency.

And, the result says nothing about demyelination; indeed, a skin biopsy doesn't generally sample myelinated nerves.

The most common side-effects with Prednisone is insomnia, GI upset (take with food), and weight gain.

I did IVIG for 9 years, but not just for neuropathy. I don't think you'd have a problem getting it approved with your skin biopsy results. It's a pretty commonly used treatment for SFN now.

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