Skin Biopsy- Yes? No? Please Help?

    • Anonymous
      December 27, 2009 at 1:02 am

      Hi everyone,

      First of all, Happy New Year! I pray that 2010 will bring us better health and more happiness!

      Second, I really need advice. My diagnosis is somewhat up in the air. I feel like Tara’s blogs could be mine. Everyone agrees that I have Fibromyalgia, Chronic Fatigue Syndrome and “some kind of neuropathy.” Two doctors have said that I have CIDP. Two others strongly disagree.

      Yes, I tried IVIG for over a year and it didn’t help at all. I have tried a Solumederal IV drip for over a year and it made me feel so crazy that I couldn’t do it anymore. I am on Prednisone and Cymbalta. I must say that Cymbalta is the only med I have taken that actually has helped reduce my pain. I am amazed by it.

      My Rheumatologist/Immunologist wants me to have a skin biopsy. In fact, he is upset because I have not already had one. I have resisted because I have had 2 muscle biopsies and 1 nerve biopsy. All were inconclusive. Plus, the site of my nerve biopsy (left ankle) has never healed properly. That was over 2 years ago. I know that a skin biopsy is on your leg. He uses 2 different sites. I am afraid that they won’t heal either and will be inconclusive.

      What do you think? Would you have one done? Am I stubbornly resisting? I really am confused about what to do and would appreciate any advice you can give me.

      Thanks so much (in advance).

      When I say my prayers, I include all of you and the knowledge that you share and the advice that you so graciously give!

      Sandila :confused:

    • Anonymous
      December 27, 2009 at 2:45 pm

      What does a skin biopsy look for? Sensory involvement? Not familiar with them.

    • Anonymous
      December 27, 2009 at 4:37 pm

      Of all the biopsies I’ve had, a skin punch biopsy was the easiest and least problematic. A skin biopsy can look for peripheral sensory nerve damage and death. It is a quite accurate measure.

      I had one prior to starting treatment, which for me has been IVIG, and a second one after a year of treatment. The results between the two where significant and a good measure to show my insurance co that the therapy was working.

      I wish you the best with your decision.

    • Anonymous
      December 28, 2009 at 1:02 am

      hi. Im still around. anyway I wrote a private post to someone else who has a similar situation to myself about this same matter. I just had the skin biopsy and it was just a second of pain while he punched too small holes in my skin. Ken was saying not too long ago that a skin biopsy can detect autonomic involvment. it can also determine weather you have had any peripheral involment and vasculitic involment. it can detect toxins too. I asked the doctor if it could go as far back as my bout 8 years ago and he said yes. My doctor was suprised that I have yet to have any pathology at all. I dont know why more doctors dont start with this. its non invasive and it points to or eliminate what direction to go. I say go for it!!!

    • Anonymous
      December 28, 2009 at 6:28 pm

      Hi Tara,

      May I ask you from where the 2 punches for the skin biopsy were
      taken? Have they healed well? It sounds like you did receive some
      good info back. Maybe I do need to go ahead with it.

      Thanks so much for your information. Take care!
      Sandila :confused:

    • Anonymous
      December 28, 2009 at 9:19 pm

      The quality of how the procedure is done, and biopsy examined is also key to a good test.

      As of two years ago? There was an increasing discomfort in using full sural biopsies for CIDP and other nerve problems as the doing of the biopsy could cause as many or more problems due to infection or loss of function in the biopsy area. Many insurance companies were beginning to stall or deny sural biopsies, and they’ve only begun to consider the skin or punch biopsies to be acceptable practice rather than experimental.
      here is a site I found useful a while ago?
      url-… hope I did that right? I KNOW there have been further publications on the issue. I just can’t find them for you rite now.
      I had a neuro want to do a sural biopsy on me? I BALKED! Big time? Why? Doc seemed WAAY too eager to do it? [Wanted to get some biopsies under his belt for his resume? or WHAT?] And then I’d read that my Insurance mite not cover it? I also felt that as I’d still SOME ‘feeling’ in that quarter? I wanted to keep that ‘feeling’ sort of a HOPE really. That was instinct pure instinct! Turned out after reading lots about the s/e’s of sural biopsies? Instinct was right, for then, and for now.
      IF and ONLY IF! It was required to be done to qualify for disability would I consider it!!!! But I don’t have to so, I won’t. But It’d be kind of ‘nice’ to know where one stands: nerve-wise, health-wise, long term wise in the end? The Univ of Rochester RIT did some studies about a year ago dealing with punch biopsies and tracing nerve regeneration. Can’t remember the sources? But it was cool and great stuff, not only for us, but for all with nerve problems!
      Ultimately? I’d do Punches, but not Taking of that big NERVE! I WANT to think I can get LOTS better! Even if I don’t? I’ve the option to FEEL if it’s better or not…rather than not at all.
      Hope I’ve helped, maybe I’m only confusing things for you.
      Hopkins was the place that designed the ‘punch’ biopsy process. Dig deeper and I’ll bet you can find good stuff. Hope and good things!

    • Anonymous
      December 29, 2009 at 5:38 pm

      Dear Homeagain,

      Thanks so much for all your information. The Punch Biopsy is the one
      my dr wants to do. The sural biopsy is the one that I wish to God I
      hadn’t done. I did loose sensation in my left ankle and it has impaired
      my walking. I am so glad that you didn’t do it.

      Because of the bad experience I had, I have been reluctant to do the
      punch biopsy. It looks like it went well for Tara, so I am reconsidering
      my decision. Maybe the info gained will be useful in finally getting a
      firm diagnosis. It is so hard to know what is right sometimes,
      especially when you are being pressured by your dr.

      Happy New Year to you.
      Sandila :confused:

    • Anonymous
      December 30, 2009 at 1:07 pm

      It sounds like you need someone brilliant that can really get to the bottom of things for you. Maybe Mayo. Ask and see if there is anyone in your area that is an expert in neuopathy that is maybe on the board of directors or something. I have heard several other people say that they have had bad experience with muscle biopsys. Keep us posted.

    • Anonymous
      January 1, 2010 at 12:40 am

      [url][/url]. this is the link to the lab that performs the test. “frequently asked Questions”. It detects small fiber neruopathy.

    • Anonymous
      January 1, 2010 at 1:04 pm

      I would like to echo that a skin biopsy is not nearly as risky/difficult as many other biopsies–mainly because they do not go as deep. The biopsy is only skin deep, which sounds dumb to say, but it is an important point in that there is not injury to important big internal structure–blood vessels, nerves, supportive tissues, etc that make healing a problem and that can cause long term effects. Muscle biopsies are hard to heal because they are deep and disruptive. Sural nerve biopsies are deep and disruptive and done at the ankle. The further down the leg, the harder it is to heal. I have not seen a skin punch biopsy ever done below the midcalf. Any procedure has risks and benefits. A skin punch biopsy may show small fiber neuropathy or vasculitis. It has a small risk, potential benefit and the balance is that even if it does not show something, the risk is small. A sural nerve biopsy also has a relatively small chance of showing a definite answer, but the difference is that the risk is much greater. Some doctors focus on the benefit–that it is does show an answer, that is a really good thing. Most now focus on the chances–that the likelihood of showing an answer is small and the risk is moderate or more to have long term concerns with healing or numbness or pain.
      Regarding how hard skin punch biopsies are, they are pretty easy. I have not ever had one, but have seen children–even young children have one done to them (for other reasons than this) and they can do it okay if is explained well to them and there is good numbing of the skin (topical anesthetic and use of lidocaine to the area).
      All this being said–it is important that the pathologist looking at the skin biopsy is good about looking for signs of inflammation and changes in nerves because the issue is not the skin, but the other small parts (nerves and blood vessels) in the skin.
      WithHope for a cure of these diseases

    • Anonymous
      January 1, 2010 at 2:04 pm

      Hi Sandila, The punch biopsy is taken on one leg- lower calf-outside, and mid to upper thigh-outside. they are only 2mm in size-about the size of a small blister. it will heal in approx 1 month, to a dark red spot that will eventually heal to normal skin in a year. I didn’t feel mine-due to the sensory issues. It will not show the cause for the small nerve fiber damage-it will only show that there are decreased amounts of small nerves present in the skin. This small nerve fiber neuropathy can be present all through the body-inside also, since small nerves are present in organs. No treatments can be determined to help small nerve neuropathy. It is a test to prove you have small nerve neuropathy present. But if you are like me, you already know you have a decreased sensory problem to begin with. Your sense of temperature is lost, touch is different, don’t feel skin injuries-like a cut on your leg for example-until you see blood. Pin ***** test can tell you if there is small nerve fiber involvement without the biopsy. I’m glad I did the biopsy, just to have the proof on paper that it is not in my head, that there is something going on, even if there is no explanation as to why, when and how this occurred. Unless you have a problem with getting a lidocaine injection just prior to the punch biopsy, then there are no risks to speak of.

    • Anonymous
      January 3, 2010 at 5:57 pm

      Hi Sandila,
      I have been on this forum for years, and many of you know the poor prognosis for me, as the protocol of treatment for CIDP failed for me.
      But, MOST IMPORTANT, I suggest anyone with CIDP should get a simple skin biopsy. It is done in your neuro’s office–a simple numbing on an area of your thigh, then they just take two needle-type instruments, a quick jab with each, it’s over, then they send it to the lab. You just have bandaids over the two tiny little spots, that heal in a couple of days. It is NOTHING like a nerve biopsy. I personally don’t have feeling in my thigh, but if you do have feeling in your thigh, nothing will change with this biopsy–it is just like getting two injections in your thigh.
      To me, this is the MOST IMPORTANT test, after iti is known that you do have CIDP, as this will see if your CIDP is or will attack your autonomic sytem. If the result shows, “small fibre atrophy”, then there is a good chance it will hit your autonomic system, like it did mine. This will explain things further, if you get ill in different parts of your body. Google “autonomic system”, and you will see what nerves the CIDP can attack in your body. My CIDP has attack almost all of my autonomic system–every time it hits a different part of my body, I get sent to another specialist, and get put on more pills…

      Yes, Sandila, this is a simple test, but a most important test.