one thing that you should do is get the exact results, the full report of your skin biopsy. what percentages and description of condition of nerves may help you now if they are borderline, or may help you down the road to compare where you are at now and where you are at then. sometimes tests come back negative that are borderline positive but you dont get that information unless you get a copy of the report for yourself.

Echoes long agoYes, I will get the result soon. Hopefully, within the week. I will post when I get it.

Did I get you right - if one is in the borderline of positive, this will reflect negative? How long should be the ideal next biopsy to reflect changes, if any?



Mrs D, regardless of the result of my test, I will continue the supplements I am currently taking now. Ddo you think this is the right thing to do?

Thank you both!!!

Glentaj is the person to ask about the skin biopsy. There are certain high and low percentiles that are considered abnormal. He knows much more than me about it, and would also better be able to tell you when you should do it again.
I do know on tests you can be trending towards abnormal but still be in normal range for that test. For example i was usually at 115% of expected for my age and height and weight, on a pulmonary function test in July 2001. I retook the test in October of 2001 and was at 80% of expected. 79% would be failing the test. The doctor told me that the test came back normal and when i looked at the numbers i said to him yeah but i dropped 35% in 3 months and he said yes but you are still normal.

For neurological tests for peripheral neuropathy, emg/ncs can come back negative even if you have large fiber nerve damage because a certain amount of damage must have occured for it to show up on the test.
The skin biopsy you took also of course has percentages.
I just wanted to let you know about the percentages thing so that you can look for yourself and better understand where you stand at the present time and be better able to compare it to where you are in the future.

I will post my results as soon as get my report for comments hopefully of Glenntaj.

Thank you for your feedback.

--with the skin biopsy results is that the definitions of "normal" and "abnormal' were rather arbitrarily set by MacArthur and his colleagues at Johns Hopkins when this was first investigated as a way to detect small-fiber neuropathies (which are very difficult to detect, as there may be no other abnormal test results, including normal nerve conduction and electromyography studies).

The Hopkins researchers did skin biopsies on a range of what were assumed to be people with normal nerve fiber densities and found that there was a wide range of fiber density even in asymptomatic individuals. After playing with the statistics for a while, they designated those who had nerve fiber density levels below the fifth percentile and above the ninety-fifth percentile as being "abnormal".

I'm fairly convinced that those with nerve fiber densities in those areas have something going on, but I also think one can have neuropathies even within that "normal" middle range. The trick is that one doesn't usually know at what density levels one started at before symptoms. As Echoes implies, one can move a lot within the normal range over time, and to me that's an indication of something going on. If one was at the sixtieth percentile in young adulthood, say, and then after symptoms is in the twentieth percentile, one is still technically "normal", but that reduction implies some neuropathic process.

This is also why one needs a neurologist familiar with these protocols to interpret. They are also supposed to note the condition of the fibers, not just density--are they swollen/inflamed, is there excessive branching, are there signs of autoimmune degeneration.

My skin biopsy was done at Hopkins two years ago, and the results were as follows:
Ankle- devoid of nerve fibers
Above the knee- reduced in a patchy distribution
Thigh- normal, but segmented and breaking down
That along with a confirmation of SFN is all that appears on the lab sheet. There were no percentiles, etc. This way of expressing the results doesn't sound like anyone else's, but it was one by a Hopkins neuro at Hopkins, says Hopkins lab on the paper.
Other tests show large fiber neuropathy as well with muscle loss. I have CMT, with no sensation to above the knee. Hands and arms are also affected, with pinched nerves.

The neurologist at Hopkins asked if I wanted further genetic testing and a spinal tap. I said no, he agreed, and it was "goodbye and good luck".

I am curious if anyone else has results expressed in this way.

I have not seen my results yet. I know that my specimen was sent to John Hopkins. I will post here when I have it.
As you may have read my post, my neurologist advised me (through phone)that my skin biopsy result is negative. I am thankful about it but this makes me so confused because I have the symptoms of a PN.

I got a similar position from my doctor too when I asked him if I need to have more tests. He said "Lets just wait and observe."

The good thing is we have this forum. Reading the posts here gives me more information - more information than I get from all my doctors combined.