And the results from my nerve biopsy are… Shocking.. (no seriously)

    • Anonymous
      December 11, 2009 at 7:33 pm

      Well, the nerve wasn’t normal, which I knew..

      But, it wasn’t indicitave of CIDP, or any other demyelinating condition either.

      I was told I have an axonopathy?

      This is actually confusing to me, because I have 4 emg’s that say I have evidence of demyelination with a likely secondary axonal loss.
      But.. do get a biopsy back to see no demyelination at all..

      That means 2 local hospital EMG’s and Mayo were both wrong.
      … I feel like I’ve been flipped on my head.

      I looked up the causes of axonal loss, and those just look nasty to me.

      I’ve already been tested for diabetes, and b6, b12.. so the not so scary ones have been ruled out.

      I go back to neurology on Dec. 29th for further blood tests.
      … oh joy..
      Diagnonsense really is an appropriate name for me.

      Sorry for mucking up your forum.
      4 Emg’s.. all wrong. lol..

    • Anonymous
      December 11, 2009 at 7:46 pm

      I feel for you. I went through a year or so wondering what I had. I was given three or four different diagnosis. Each time you say,” Well, at least I know what I have. now I get to deal with it.” But when you don’t know, it is hard to accept, understand and/or deal with.

      I hope they get your situation cleared up. By the Way, many folks have spent time here and been diagnosed with something else. One thing we all have in common is an uncommon situation in life, and usually a nasty disease to deal with.

      Take care, I hope things work out good for you.

      Dick S

    • Anonymous
      December 11, 2009 at 8:13 pm

      It sounds like you’re going to need an good internal medicine specialist to get the bottom of this since diabetes and vitamin B deficiencies have been ruled out. Good luck.

    • Anonymous
      December 11, 2009 at 11:49 pm

      I hate to even suggest this….but is it possible for the nerve biopsy to be wrong?

      I’m just saying it’s odd that 3 tests show the exact same thing & this is the only test that doesn’t show demyelination. I’m just thinking if I had 4 tests & 3 all said the same thing, I would tend to believe the 3. I don’t really know anything about the accuracy of a nerve biopsy so take what I say with a grain of salt.

      Can you ask to have a 2nd opinion on that nerve biopsy?


    • Anonymous
      December 12, 2009 at 12:05 am

      You know, you are absolutely right.

      It just astounds me that 3 seperate neurologists at 3 seperate facilities (I had 2 EMG’s performed at Mayo) Would f-up the same test… and oddly get the same results.

      All of my EMG’s came back with a length dependent demyelinating sensory-motor mixed polyneuropathy, with a likely secondary axonal loss.

      … I mean.. The chances of 3 neuro’s at 3 facilities screwing up… :confused: :confused:

      But, what if the person that got hold of my nerve was careless?
      Or.. maybe that specific nerve is more axonally damaged?

      I will call on monday to see if I can get a second opinion on it.. if its not too late.

    • Anonymous
      December 12, 2009 at 12:53 am

      I had mine done at Mayo in 2002 & it was read by Dr. Peter Dyck Sr. His son )same name) still works there & there’s a good chance he read yours. Anyways, I would definitely trust Mayo; getting a dx is what they’re all about…

    • December 12, 2009 at 2:45 am

      Hi Diagnonsense,

      My neuro sent my nerve and muscle biopsy, which was done by a local surgeon, to a Neurological hospital in Salt Lake for a second opinion.
      I never hurts to double check.
      Mayo is a renowned medical center and I’m sure the doctors there would be more than happy to receive a second opinion.
      The best doctors and top notch-medical facilties always welcome second opinions, because they know that even with all their expertise they are sometime not perfect.
      In your case I hope you find the answer soon. I was scared when I didn’t know what was wrong with me. At least you are in good hands at Mayo, and I have faith that things will get better for you.

    • Anonymous
      December 12, 2009 at 7:47 am

      I hope that you get some answers soon. It is really hard to not have a diagnosis. this is the state that I have lived in for more than two years. I have come to now waffle between wanting to know and not wanting to know–maybe like you are at the present. I want to know if there is something on the better end of the spectrum or that is treatable so that something can be done and I could get better. I don’t want to know if it is one of the really bad diseases for which nothing can really be done to stop it. Unfortunately, you cannot have it both ways.

      One important thing for your doctor(s) to think about is there is more and more evidence that pre-diabetes can be associated with neuropathies. You may not have full-blown diabetes, but they may want, based on these findings, to test you more carefully for early or pre-diabetes.

      As someone who works with people (children) with complex diseases and as someone with a complex something myself, finding a diagnosis is like having a bunch of puzzle pieces to shuffle. Sometimes there are not so many pieces and a pattern to have it fit together is easy to see. Sometimes there are a lot of pieces and pieces missing and pieces that are present but painted over so that all you see is the shape. In this case, trying to find a diagnosis is like trying to put an all white puzzle together. As more information is found, the pieces are uncovered so one sees colors and as a couple of pieces fit together one starts to have a way to find attachments for the other peices. Often there is an “Aha” moment when the pieces start to come together. A good puzzlemaster (neurologist in our case) helps to optimize finding a start–either putting pieces together or uncovering the colors on the pieces. Sometimes though, still, it takes work and persistence to get the puzzle put together. Hang in there.

      WithHope for a cure of these diseases and a better way to diagnose them.

    • Anonymous
      December 13, 2009 at 3:35 am

      I would think that the nerve biopsy would clarify the other tests. I mean they are looking at an actual nerve. They would not be guessing about anything, they can SEE it.

      There would be evidence of demyelination and remyelination. The schwann cells repair myelin, but repaired myelin looks different from undamaged myelin.

      I would think that the biopsy should clear some things up and give the doc’s a direction.

      I totally sympathize with you and understand your angst about having no diagnosis and an unclear future. The one thing you should NOT do is quit. If it wasn’t CIDP, it IS something. I don’t think it will magically go away. Keep your chin up and keep on your neuro for a diagnosis that makes sense. If your neuro is worth his/her salt, they will keep after it until they come up with something.

      Good luck
      Dick S

    • Anonymous
      December 14, 2009 at 1:50 am

      chronic motor axonal neuropathy? I wonder about acute motor axonal neuropathy instead of classic gbs with me because my skin didnt really go numb. the doctor asked me if I had symptoms like numbness with the acute bouts and I realized only then that your muscles going numb underneath the skin was not normal for GBS with out the numb skin. Im a little slow. I also had a rapid onset that took hours and short duration that lasts days and very little demyleination indicated in the emg acording to the doctor. this would be consistant with AMAN or a bunch of other things.

      My point is that your emg showed demyelination right? I think axonal does not look the same. Is there both?

      weird stuff

    • Anonymous
      December 16, 2009 at 4:33 pm

      My Dr. told me that nerve biopsy’s are often not conclusive as it just means that the area took the biopsy does not have demylenation..does not mean there is none in other places..good luck getting to the bottomof this


    • Anonymous
      December 17, 2009 at 10:55 am

      [QUOTE=hopalong]My Dr. told me that nerve biopsy’s are often not conclusive as it just means that the area took the biopsy does not have demylenation..does not mean there is none in other places..good luck getting to the bottomof thisSonia[/QUOTE]

      [SIZE=”2″][I]And my neuro told me that she would trust no one in my city ( 2 million … not a small burg ) to do a nerve biopsy. She was trained at Johns Hopkins and trained to read biopsies that came in to them. Many [U]many[/U] were so mangled that there was no way to do an accurate reading. I would be sent to a facility a couple hundred miles away for the biopsy — several specimens along a few inch path.

      So even if the biopsy went to a fine institution to be read, if the biopsy was screwed up, diagnosis is a coin flip.[/I][/SIZE]

    • Anonymous
      December 17, 2009 at 12:08 pm

      Hi Diag, I’m curious, when you had these emgs performed-were you in a relapse or in a period where you were having alot of problems(as compared to a period where you are on a steady course)? or were you having a good day when each were performed?
      I have had over 13 emgs ncvs over the last 5 years, all were performed when I was not in a relapse or during a paralysis event. I was able to move in other words. I have a 75% chance of having cidp or something that has many of the same symptoms as cidp, the other 25% shows something else is going on-which the drs have told me is a very rare disorder-so rare they have no idea of what it is yet.
      I did have a skin biopsy performed this past summer which showed small nerve fiber neuropathy. Which could be the cause of some of my other nerve related issues-bladder.bowel, temp control, numbness, tingling etc. The cause of the snfn is unknown at the present, as I did not have these problems before my paralysis events started in 05.
      Out of all the emgs ncvs I had, I was never told of any chance there were small fiber issues-my current neuro had thought there would have been worse numbers on a couple parts of the tests-now he knows for future referrences. Its really all in the reading/anaylizing of the results of the tests that makes the case.
      Don’t give up hope for a dx, and on the other hand don’t give up life waiting for a dx-it may not happen. Stay positive and live like there is no tomorrow.
      Take care.