Hi.
I received a call from the doctor yesterday informing me that the result of my skin biopsy is negative. This makes me happy knowing that I dont have PN, but at the same time more confused and anxious.

Confused and anxious because I experienced (and still is) most of the symptoms of a peripheral neuropathy. In fact, this was my official diagnosis from my previous 2 neurologist until I was referred to this 3rd neurologist who did the skin biopsy. I have very painful (both) feet, tingling, prickly skin similar to being rubbed by a sandpaper. I used to experienced severe burning but that stopped since March 15.

My doctor is no longer keen to pursue any further investigation of my condition. When I asked what would be the next course of action, he simply said "lets wait and observe". I am hoping not to just wait and observe. With the negative result, I asked if I have PN, but he could not give me a straight answer.

If my doctor is correct, what other condition/s could I have?

I am really hoping that anyone can give me some thoughts about my condition.

Thank you.

Mary

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.

Hello, I have had burning, tingling, stabbing shooting pains in hands and feet for over ten years. It has, at times, gone into remission or was mild. In 2009 had EMG, nerve conduction and skin biopsy..all normal. Symptoms came back strong this July. Rhemo, pain doctor and neuro all said symptoms of small fiber so I had another skin biopsy. Came back negative so neuro (a new one) said I don't have neuropathy and told me to go to the Mayo clinic (which denied me last go around with this). My hands and feet are getting increasining numb. neuro confirmed that my vibration was decreased. Tips of fingers and heals cannot detect hot or cold.
My question is...I'm on Cymbalta, neurontin and 150 MG prednisone 1 week for four weeks. Can the medications alter the testing results? Particulary wondering about past EMGs and nerve conduction. one said totally normal, one said radiculapathy. Was on meds during that time also.
PS offical diag. Undifferentiated Tissue Disease (last ten years) ANA only blood test to come out high. ten years ago complements also came out low..
Any input would be appreciated.

In a strange way, I feel relieved that there is also another case like mine. Like you, I feel all the very unpleasant sensations in my skin. My legs are painful. I cannot stand for too long, nor walk (but I can tolerate the walking than standing). I could not exactly describe the pain when I stand, suffice it to say that I need to sit down immediately.

As of my last neuro visit, the doctor noticed a reduction in reflex of my left leg compared to his previous examinations. He needs another EMG/NCV. This time, he will do the test himself.

I am on gabapentin at 1500 mg/day.

I dread the touch of my clothes in my legs and arms, so I am not looking forward to wearing thick clothes this coming winter. I am always on constant look out for materials that will not bother me. I noticed that pajamas with spandex materials are less prickly to me.

I would be interested for your updates.
I am sorry I could not answer your question as to your medicines altering your test results. I am sure the experts will reply to your query.

Hi Bernadettmarie,
I have the same symptoms as you except for the numbness. Vibration was normal. I had an EMG/NCS twice. One year apart. Both came out normal for Large nerve N. I finally had a skin biopsy this past Fall. It showed I have small nerve neuropathy. Did you find out what is going on with you? Did the cymbalta alter your tests. I tryed cymbalta but it was horrible. How much neurotin are you taking? Im taking lyrica but thinking about changing to neurotin/gabapentin because of bad side effects . Hope your doing better!

--repeat skin biopsies from the same locations at eighteen months, forty months, and seventy months have shown somewhat increased nerve fiber density each time; on the last one I am back to about the 18th percentile, which certainly corresponds with re-enervation and the improvement in symptoms.

Of course, we'll never know what was normal for me before all this started, and what percentile I would have been at then.

Can you list the reference ranges from your skin biopsy? I am not aware of any changes to the numbers, but it is possible your numbers are normed to your age and gender (I am male and was 43 at time of first skin biopsy; it is known that "normal" intraepidermal nerve fiber density does decrease with age).