Recent content by kman543210

  1. K

    Denervation/Reinnervation

    I've tried to read up on these two terms, and the doctors have been no help. I have had 3 neuros and 7 EMGs. One neuro who was a DO, one ALS specialist, and a team of neuros at the Mayo Clinic just this last September. They all see the same thing in my legs and arms: evidence of reinnervation...
  2. K

    MND Breathing Problems

    Thanks for the reply Davis. When yours went from 60 to 40 in 3 months, was this a noticeable difference? Did you feel out of breath or just that you couldn't pull in a full breath? Do you have other involvement like difficulty swallowing along with your breathing? I'm having 24/7 breathing...
  3. K

    Is it ever too early for an EMG?

    I can share my personal experience with the EMG/NCV tests, as I have had 7 of them total. The first one that I had done, not by a neuro, back in February 2006 had some abnormalities (I don't know what they were). My second on in May 2006, done by a neurologist, didn't show anything abnormal...
  4. K

    MND Breathing Problems

    I know this has been covered a lot in the forum, but I have a few questions for those who have been having breathing difficulties due to MND. I have not been diagnosed with ALS and most likely do not have it, but I do have motor nerve involvement, confirmed by 6 EMGs and 3 neurologists (DO, ALS...
  5. K

    No EMG

    I forgot to mention that I have had 7 EMGs in since March 2006: 1st one showed something abnormal, 2nd one done by neuro didn't show anything, 3rd and subsequent ones all showed similar things with motor nerves.
  6. K

    No EMG

    Also keep in mind that even if there is motor nerve involvement, it doesn't necessarily mean that it's ALS. I have been to 3 neuros (regular, ALS Specialist, and Mayo Clinic), and all have said that they don't think I have ALS. But I do have motor nerve involvement in both arms and legs...
  7. K

    Shortness of breath; Occassional or Progressive?

    I have an additional question to the original question. I always see "shortness of breathe" as a symptom of diaphragm involvement with MND, but I was wondering exactly what everyone's experiences with this has been. Did you notice just feeling out of breathe, or did you just feel like you...
  8. K

    For those of us in unknown land...read this...

    I too am struggling with the whole Lyme vs. MND thing. I am currently seeing an ALS specialist who says she's pretty sure I don't have ALS. She notes that she sees "chronic" reinnervation but no evidence of denervation. My entire illness started 3 years ago coming home from a camping trip in...
  9. K

    Breathing Difficulties Worsened

    Thanks for sharing your story, Jamie. I didn't even go into my other symptoms before the muscle weakness started, as I respect that this is an ALS/MND forum. I hope you're not offended by this, but I have been on Lyme forums and have seen too many people think everything is Lyme Disease. I...
  10. K

    Breathing Difficulties Worsened

    That's the weird thing about this entire disease I have is that all of my symptoms came on suddenly, even if the severity took months to a year to get at their peak. I was never convinced of Lyme, but I saw a doctor who was convinced. Most other doctors don't acknowledge it, which is certainly...
  11. K

    Breathing Difficulties Worsened

    I posted a few months ago on this site, but I have a little more information and worsened symptoms, so I just wanted to hear other people's experience with ALS/MNDs. I had several debilitating symptoms that started 3 years ago before the motor nerve involvement, but I won't go into detail for...
  12. K

    Back from Appt....!

    I hope your muscle biopsy tells something. I had one last year after my first EMG showed abnormalities that were "non-specific". My muscle biopsy was normal. The procedure wasn't that bad. Once they numbed it up, I could barely feel the as they were going through the skin, and couldn't feel...
  13. K

    Ceftriaxone

    ceftriaxone experience I have not been diagnosed w/ ALS (or anything yet), but I do have experience with Ceftriaxone. I started Ceftriaxone in Dec 2006 (2g/day) and had to have a PICC line put in. This is a catheter put in the arm. This might seem extreme for some, but I had a central venous...
  14. K

    27 yo looking for answers

    hang in there How long have you had all these symptoms ucla, the twitching and weakness? All I can say is hang in there buddy because from what I've heard about any neurological disease, it takes a while to diagnose. I've been going through my ordeal since July 2004 without any diagnosis or...
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