I'm sorry it took me so long to get back about this. I got really sick. I guess the Enbrel lowered my immune system and I caught a virus. I was in bed for a few days and then just felt lousy.

I looked up my skin biopsies. The one from Hopkins does not give numbers in the results. It states that
The distal thigh and distal leg results were:
The epidermal nerve fiber density and distribution are within a normal age. The morphological appearance of the fibers is normal.

The proximal thigh the nerve fiber density is within normal limits although there is marked fiber segmentation.

The biopsy done at my neuro for left calf result value 3.54 abnormal is <5.4 low normal is 5.4-5.7.

The left thigh result was 6.28 abnormal is<6.8 low normal is 6.8-8.0.
Diagnosis was skin with significantly reduced epidermal nerve fiber density, consistent with small fiber neuropathy.
These results came from Therapath in New York.

I saw my neuro a few days ago and requested another biopsy to see if things had gotten any worse and he said no. He said it doesn't work like that and he is confident in his lab results and my symptoms are definitely SFN.

Any thoughts would be appreciated.

Sorry, no insightful thoughts... just comments for the sake of commiserating! I had extreme muscle weakness when my nerve pain first engulfed me years ago, especially leg/thigh weakness. Climbing stairs was the first indication there was a problem. I couldn't even stand to wait for an elevator without looking for somewhere to sit down. It's gotten somewhat better, though I have muscle pain pretty much everywhere and my legs get shaky if I have to stand too long. Given I have both nerve pain/paresthesias and muscle pain, there was the suggestion of fibromyagia, though I have been evaluated twice now and demonstrate no tender points when examined. It's just deep muscle pain and burning everywhere. Do you have it inside your mouth, throat, ears, etc.? Just a nightmare.
Since my nerve biopsies show nerve densities within normal range (though I have the swellings) I haven't been officially diagnosed as having neuropathy. Good thing, right? But there has been the suggestion of a "central sensitization" maybe triggered from chronic peripheral nerve pain that perhaps is caused by a chronic virus, as I continue to test positive for it. Bad thing, right? As parvo virus b19 is medically documented to be a trigger for certain auto-immune conditions, I do wonder if something like that will eventually surface.
I think I can speak for so may of us here who feel that if we only knew what it was that was raging through our bodies, we could perhaps deal with it a little better. I find myself looking behind every tree and under every rock because being in this much pain and feeling this ill just can't be idiopathic. But, so far literally hundreds of vials of blood and numerous diagnostic procedures have only turned up the parvo virus dna; some perivascular inflammatory infiltrates; and small to medium sized axonal swellings... nothing to stitch together a firm diagnosis and corresponding treatment.
Hopeful, what symptomatic treatment/RXs are you taking? What has been your experience with them? Any input is appreciated as I'm facing the fact I may have to ask for bigger guns than the Gabapentin/Nortriptyline.
FYI.. just yesterday at the grogery store I saw a bumper sticker that said, "Choose Hope." I thought of you and me, really. God speaks through strangers sometimes and draws other strangers together for comfort on a web site. I hope "Liftyourhands" is checking in, too.
God's comfort and blessings to you.

Hi heb1212,
It's funny you tested positive for the parvovirus, I I did to before this all started. They said it could have been from years ago and had nothing to do with my neuropathy.
I'm glad to hear your muscle weakness has gotten better. Mine also started with having trouble going up the stairs. Then it started to be difficult to stand to long in one place. Now I'm staring to have trouble when I walk from the living room from the kitchen. Once I stop for a few seconds and wait I can the start to walk again. It's strange walking doesn't bother me.
My current Rx is cymbalta, tramadol, synthyroid, supplements, IVIG and enbrel. I don't think I'll be staying on the Enbrel. I have a skin reaction that gets bigger and bigger with each injection. I tired so many Rxs. The cymbalta really helped. The IVIG helps too for about a week. Maybe talk to your doctor about one of those.
I do sometimes feel the neuropathy on my tongue but not always.
I know I just have to learn to treat the symptoms and usually I'm pretty good at it. Every now and then when a new symptom comes up or one of my symptoms worsen I feel the need to try to figure it out again.
I hope we all get answers and/or relief one day. I'll have to keep praying and enjoying life as much as I can!

I have only had a skin biopsy at Hopkins (twice). Both times there is no density numbers at all (just within normal limits), yet description of fiber condition is very detailed and shows significant damage

I was frankly pretty disappointed that the institution that developed the test (I believe it was Hopkins) doesn't even provide the density numbers in their results...which would allow progression to be noted, even if initial tests in normal range (it could be informative to see if borderline or heading in the direction of abnormal).

However, Hopkins did do a fancy MRI/MRN to look at the dorsal root ganglia and found bilateral damage & enlargement/swelling. So this also led to the explanation of the neuropathy diagnosis. I do plan to get another skin biopsy this summer (will be 6 years from the last one) to see what has changed.

As for the Sjogren's, I have this even though my blood work has always been negative. My biopsy was positive, but only by means of so much damage there was nothing but scar tissue left. My doctors (several) believe my negative blood work is due to my deficient immune system...that not enough 'antibody markers appear' because there isn't enough antibodies to begin with.

A diagnosis is only good if it means a change or different possibilities in treatment options. I thought you were receiving IVIG. If you still are, you are receiving the best option available for autoimmune based neuropathy. If it helps, then I wouldn't worry about pinpointing the neuropathy. If it does not help, then yes I would understand you wanting more info to see if you might benefit from other options...for other types of neuropathy.

Hi enbloc,
I've never thought about my deficient immune system causing lower antibody markers. That is a very good reason for negative blood work.
You are right. I am getting IVIG and it does help somewhat. My doctors are now considering raising my IVIG to every two weeks. I'm ready to give that a try.
I just get really worried about my leg weakness.
Please let me know if you get another biopsy. I'm interested to know if anything changes.
Thanks for your help!

It sounds like you need to continue your search for a new doctor. I have gone through three before finding one who really understands and spends the time to help me. And it was actually my gynecologist who recommended her! I too traveled to Hopkins and had no clear cut diagnosis after countless tests and both a skin and lip biopsy.

The first neurologist told me my EMG/conduction studies showed definite small fiber neuropathy. The second looked at her test results and disagreed but said my description indicates neuropathy-that the testing does not necessarily show the damage until it is beyond repair (which may be good news for you). Hopkins said their EMG/nerve conduction shows nothing but the skin biopsy showed innervation of sweat glands leading to small fiber neuropathy symptomology. And also that my bloodwork indicates Sjogrens but my lip biopsy came back negative. Since the treatment in either case is to manage the symptoms, at this point my action plan is to manage the pain and fatigue and try to pinpoint and avoid triggers. The doctor I have now, who I LOVE, says many patients have "clinical" neuropathy that does not show up on any testing. So there you go....this could be your case as well.

It is SO frustrating and I feel your pain (literally). Hope you find this forum as useful and supportive as I do

Hi cat,
I find it so tough when the doctors disagree. Then I don't know who to believe. It all gets so confusing and frustrating.
It does help me to hear others say that the treatments I am on would be the same for most of the things I have been told I may have.
By the way I was told at Hopkins when my lip biopsy came back negative, that it may have been a different result if they chose a different gland. Apparently, some glands will show it and some won't.
Thanks for the support!!