Back to neuro on 12/8/09 .. nervous

    • Anonymous
      December 5, 2009 at 5:41 pm

      I’m worried that the nerve biopsy will come back not conclusive enough to diagnose me.

      Which is almost silly, because they took it from my sural nerve (which on EMG thats a nerve that has zero response)

      Which in theory then there should be no way that nerve could possibly be “normal”. .. cause no response doesn’t indicate normal in any sense… right?

      I’ve just been told that nothing but the EMG has been abnormal for so long, and have been going without treatment.. that I’m just scared of being “ideopathic” and without a diagnosis everyone seems to think its all in my head.

      Sorry for the blab.. just pray that it comes back conclusive of something. Please.

    • Anonymous
      December 5, 2009 at 6:23 pm

      I would feel the same way. believe me when I say that there is nothing silly about that

    • Anonymous
      December 7, 2009 at 1:55 pm


      the sural tends to get whacked early. Mine is gone as well. I didn’t have a biopsy though.

      I forget exactly, but the doctor usually needs like a three out five usual conditions to make a diagnosis.

      Like if your spinal fluid is normal they need alot of EMG data coupled with examinations and maybe some MRI showing demyllin or visa versa.

      For me Diagnosis was made with Physical Exam. loss of reflex’s, EMG, history, MRI w brain demylin. spinal was normal.

      Hope it works out for ya

    • Anonymous
      December 7, 2009 at 2:05 pm

      ditto on my diagnosis – same as Tim + NCV abnormalities, something with the F wave but I can’t remember now 😮

      try not to worry, from my experience it really doesn’t make the time waiting for an answer go any faster and is a waste of precious energy 🙂

    • Anonymous
      December 7, 2009 at 7:04 pm

      thanks for posting that Tim. thats interesting. I have the loss of reflexes with proof of it diminishing in an ascending order, emg and mri findings, LP w/ minimal elevation at 49 (at this hospital the high range starts at 46) and a huge 7.5 year history including PE twice but you forgot one factor in diagnosis and that is the right doctor to interpret those findings.

    • Anonymous
      December 7, 2009 at 8:33 pm

      on the EMG’s

      The most important part, I think is the conduction velocity. a number like
      39 followed by m/s probably millisecond. the speed of transfer. the higher the
      number the better. the lower the number or Zero/NA is a breakdown in the nerve from point to point.

      I don’t have anything on my reports that sais F wave, he said about sharp waves but that might be the peak latency.

      The big power words or terms are: Conduction velocity, Amplitude, partial, reduced, Blocked and demylination. If you see 4 or more of these on your report, its trouble.

      Anyway, you can google yourself to death looking all this stuff up as I did last year. Another thing is if your reflex’s are overactive, thats a sign of another condition. ALS.

    • Anonymous
      December 8, 2009 at 3:07 am

      I hope that you get a diagnosis and that this means good things for you–that it indicates a treatable condition and that treatment can start is best, but just having a diagnosis can help. I wanted to say though, that it is important to believe in your body. You HAVE conduction block and an abnormal EMG. It is not in your head. You have symptoms that are consistent with a neuropathic condition. The reason that I say this is in case a diagnosis is not made. This still does no mean it is in your head–it just means that a diagnosis is not made yet. I hope that you get one and that it is something treatable and that the treatment can start really soon, but the nervous system is a very complex system and it is sometimes hard to make a definitive diagnosis (for lots of reasons).
      I would like to say something else, increased reflexes can be a sign of many things in addition to ALS. ALS is scarey. I had brisk reflexes despite other signs of neuropathy and still do not have a definite diagnosis, but one thing I do have is dystonia that is causing the brisk reflexes–not ALS. I am on dopamine now and better able to walk. I have been told how very odd I am with my age (over twice yours). Another thing to say is that idiopathic just means “of unknown cause”. You know that, but it is worth restating that it does NOT mean “all in your head”.
      Just the way you stated your post makes me want to say this about the emotional part of waiting for a diagnosis and also about the wish for validation by having a diagnosis.
      WithHope for a cure of these diseases

    • Anonymous
      December 8, 2009 at 12:01 pm

      Well, they canceled my appt. cause the pathology of the nerve biopsy is not back yet. (so no real need to go in)

      I don’t have ALS.. I don’t have hyper responses.
      I have absent/deminished responses in some.. and normal in others.

      Conduction blocks and slowing wich points to demyelination.. but its a sensory mostly.
      I’ve also got secondary axonal loss. *not super bad, but is present*

      So, since my case wasn’t clear cut, we had to have those other test, such as spinal, and nerve biopsy when my spinal was clear.

    • Anonymous
      December 8, 2009 at 12:06 pm

      Sorry to hear they cancelled your appointment. I hope the results come back soon. I will be praying that once they get the results they will also have a dx for you. Keep us informed as soon as you know.