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Old 09-17-2012, 05:32 PM #31
bernadettemarie bernadettemarie is offline
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Default Two negative sfn skin biopsy

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.
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Old 09-18-2012, 08:26 AM #32
Idiopathic PN Idiopathic PN is offline
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Originally Posted by bernadettemarie View Post
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.
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Old 01-29-2013, 10:24 PM #33
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Originally Posted by glenntaj View Post
here's what my first skin biopsy report said (without the extraneous stuff about how the sample was collected):

Epidermal nerve fibers per millimeter:

Thigh Mean 4.7
Range 3.0-7.7
Reference Values: 21.1 +/- 10.4; range 2.9--57.5
Fifth percentile value 5.2

Leg Mean 3.2
Range 1.3-4.3
Reference Values: 13.8 +/- 5.6; range 0.6--32.2
Fifth percentile value 3.8

The reference values indicate the mean in the tested reference group, which presumably included normals and people suffering from small-fiber syndromes normals (first number), then the standard deviation in that group (the +/- number), then the total range across everyone. These are known as the McArthur protocols. The fifth percentile values are then given, and as you can see, my means are both below that value, so by protocol definition, I have "abnormal intraepidermal nerve fiber density, consistent with a small fiber neuropathy". The report also states "the nerve fibers within the thigh suggest excessive branching, also consistent with a small-fiber neuropathy".

In my most recent skin biopsy, my thigh mean comes back at 9.5, and my leg mean comes back 5.8, which they tell me averages out at about the 18th percentile. This was almost two years ago--it's possible I would show even more re-enervation now, but who knows at what figures I "began".
Hi glenn,
Are those reference values still valid? The reference values shown on my skin biopsy were different. (Done Oct 2012) Could they have changed the protocals? Using your reference values for my skin biopsy I would have been in the normal range. What lab did your tests? Mine were done by Therapath.
Pardon my ignorance but what do you mean by "re-enervation"? Your most recent report shows higher numbers. Doesn't that mean improvement.
As usual Thank you for your help.
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Old 01-29-2013, 10:40 PM #34
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Originally Posted by bernadettemarie View Post
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.
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!
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Old 01-30-2013, 07:18 AM #35
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Default Yes--

--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).
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Old 02-08-2013, 12:33 PM #36
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With regards to the biopsy, I must caution you and others about the results. I am seeing Dr. James Berry at Mass General who specializes in SFN and he explained the difficulties of biopsy. He said at one time he did them frequently but discovered in too many cases the nerve counts were normal or near normal when there was clearly a problem. He also saw cases where the nerve counts were abnormally low and there was no associated problems. He definitely uses them when the neuropathy appears to be advancing rapidly. But in general, when the neuropathy is not advancing, it does not take him in any new diagnostic direction.
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Old 02-12-2013, 09:32 PM #37
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With regards to the biopsy, I must caution you and others about the results. I am seeing Dr. James Berry at Mass General who specializes in SFN and he explained the difficulties of biopsy. He said at one time he did them frequently but discovered in too many cases the nerve counts were normal or near normal when there was clearly a problem. He also saw cases where the nerve counts were abnormally low and there was no associated problems. He definitely uses them when the neuropathy appears to be advancing rapidly. But in general, when the neuropathy is not advancing, it does not take him in any new diagnostic direction.
dAC122: Does it mean that there are cases when nerve counts are normal or near normal but patients are symptomatic while on the other hand, there are nerve counts that are abnormally low and yet patients are asymptomatic?

For t hose asymptomatic patients, how can they subject themselves to skin biopsy when they dont have symptoms of discomforts in the first place? I'd like to understnd what the doctor meant about his precaution of getting a skin biopsy. My skin biopsy last year showed normal result but my pain is getting worse than when it started.
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Old 02-13-2013, 08:01 AM #38
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dAC122: Does it mean that there are cases when nerve counts are normal or near normal but patients are symptomatic while on the other hand, there are nerve counts that are abnormally low and yet patients are asymptomatic?

For t hose asymptomatic patients, how can they subject themselves to skin biopsy when they dont have symptoms of discomforts in the first place? I'd like to understnd what the doctor meant about his precaution of getting a skin biopsy. My skin biopsy last year showed normal result but my pain is getting worse than when it started.
I am sorry I probably stated that wrong. You are right, asymptomatic patient would not even see this doctor, much less take a skin biopsy. I think he meant patients who had milder symptoms.

My take away from discussions with Dr. Berry is that he did not see strong enough correlation between nerve counts and symptoms to take him in a different diagnostic direction for cases where symptoms did not advance. Hence he has stopped doing skin biopsies, except in cases where symptoms are rapidly advancing.

My wider point is that skin biopsies have their place but maybe not for those with stable symptoms. Following his protocol you might be a candidate for another skin biopsy.
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