Originally Posted by en bloc

Just so everyone here knows: If you question the accuracy of your biopsy, then by all means have it re-read. Johns Hopkins accepts tissue samples done outside and their pathologist will read them again. Tissues are frozen and stored for long time periods, so no problem in having this done. In many cases, insurance will pay for these 'second opinions' and this includes second readings...you'll have to check with your own insurance company.

I also can't emphasize enough to have the morphology (condition of the fibers itself) checked...and Therapath does not include this as part of their services (they only check density). Johns Hopkins does...as does other major institutions. This is so important, especially if your biopsy was negative and you still don't have answers...but you still have symptoms.

Just a thought.

Originally Posted by Healthgirl

I don't think we are in opposing positions here.
My SFN is suspected to be autoimmune due to a very high ANA, that went up in correlation with the severity of my symptoms. Even though this is suspected, they cannot or will not proceed with any treatment, so this is the main reason why to me, it was more upsetting to know that there is actual damage. I also have absolutely no prognosis.

I definitely understand your point about this disease being labeled as fibromyalgia or having no name at all. I was fortunate to have had one of the early doctors I dealt with who was very serious and was sure there was something terribly wrong. He prompted me to go right away to the city. It took 4 months after landing in the emergency room a few times to have someone decide to do a biopsy.

I hear the stories of people who have gone years with being told this misery is all in their heads. I was told I had lyme, fibro, dystonia, raynauds., sjogrens... I don't even remember what else. So, the skin biopsy settled that, but still leaves me nowhere in terms of treatment or having my life back.

For what it's worth, my biopsy results for the ankle was borderline and the thigh was significant. My symptoms in my foot and calves are ten times worse than my thighs (thighs are bad too, and that is where I get the vascular rash) - but if you'd asked me, I would have thought the ankle damage would have been worse). They didn't take any samples from my upper body where I have muscle spasms, tremor, lack of coordination, etc. Also, one emg was abnormal and one was normal, so what use were those?

When was your biopsy? Are you due for a retake? In your situation, if you have doctors who would do IVIG, then it would make sense. Personally, I don't want to have it redone. I can't bear hearing if it is worse because they will not offer me ANY treatment whatsoever.

I am going to a toxicologist and a functional md next week. I'll update when I hear what they have to say and hopefully will have some new avenues to share.

Originally Posted by Susanne C.

I believe Hopkins developed the procedure in the first place. Mine was done there and the report stated both number and condition of fibers as you said. Results were devoid at ankle, reduced at knee, and segmented and breaking down at upper thigh. The condition of the fibers is an important clue to the progression. It clearly indicated an advanced, progressive, length dependent SFN. Both the doctor at Hopkins and my local neuro said it was pointless to repeat as it is progressive. ( I have hereditary neuropathy, CMT) my EMGs are also abnormal, so I have a diagnosis. A diagnosis doesn't always mean there is a treatment.
If you are in any doubt about results definitely consider Johns Hopkins.

Originally Posted by en bloc

You are correct, Susanne...Hopkins developed the skin biopsy. Not only is the condition of the fibers important for progression, but also when some cases that density is normal, yet condition shows signs of damage. This can happen in autoimmune presentation of SFN...especially at the beginning, when proper diagnosis is so crucial for early treatment options.

Second opinions are not just for doctors...second opinions can be for biopsy interpretations as well. Especially, if you don't think the testing/evaluation/sample/etc was handled or done properly. It doesn't matter who did the biopsy, or what reason you want another opinion...it is your right to have it done to make sure the correct diagnosis is being made and your treatment reflects that Dx.

Originally Posted by en bloc

In autoimmune based neuropathies, it can appear with or without abnormal morphology.

I am a bit surprised that you only had ONE site biopsied. There is no way to determine length or non-length dependent neuropathies unless you do more than one site. Why did they only do one? That is pretty rare, I think.

I am pretty sure other large, well known facilities, will accept outside samples for re-review. I just know for sure that Hopkins does because mine was done there and my neuro mentioned it in random conversation. I think Glenn has also brought this up before and I believe he listed several in the NY area. But I don't know about TX, David.