1. J

    back from neuro, closer to diagnosis of something?

    I have a spot on my brain stem that he thinks could be causing all of my symptoms, so tomorrow is a brain MRI but this time with contrast. However, he wants me to go to UAB as planned to meet with the big mac daddy of EMG/NCVs. In the meantime he is trying to rule out adult onset SMA, Primary...
  2. Zaphoon

    I Have Pns!

    Bare with me in my folly for a moment, if you will. Please allow yourselves to take your mind off of ALS for the moment and bring yourselves into my world; the world of PNS. DISCLAIMER: The following is meant for entertainment purposes only and none of what you are about to read can be backed...
  3. J

    Anyone else have this?

    Do you feel this tingly feeling, like your hair is standing up and then when you look it isn't. Then a sharp pain here and there, almost like an itch? Also, every time I feel I can forget all about this, wait for the EMG and focus on other things, something strange happens. Not to mention the...
  4. J

    This is the 2nd time around for me, different diagnosis though

    Hi everyone. I am freaking out a bit right now as you can probably relate to. 12 years ago I was diagnosed with Cardiomyopathy and Congestive Heart Failure. I was 29 and seemingly healthy. I had a virus prior to the diagnosis but it's still idiopathic (unknown origin). The short version is...
  5. Zaphoon

    Just A Thought

    I'm sitting here going through positngs and wondering if there are any neurologists that read this forum? Not that they would really have the time... This could really give the medical pros keen insight as to what goes through the minds of their patients after the clinic visits. Shucks, why...

    Just Returned From The Mda/als Clinic

    Here's an update for those of you who are following my saga. I just retuned from the MDA/ALS clinic. I saw an RN, Respitory Therapist, an Occupational therapist and the ALS Dr all this morning. The ALS Dr. does not believe I have ALS, my reflexes were normal to diminished and 60% strength on my...
  7. S


    Hi everybody, I was watching our local news tonight and there was a story about Pompe disease which is a type of neurological disease, they started to use a drug called Myozyme which has just gotten FDA approval. The drug company has also mentioned they are going to do trials with this drug...
  8. M

    Stem Cells

    I am sure many people have seen this article, but for those who haven't here is the link. Looks to be pretty big news. A tiny start-up company in Irvine has a shot at becoming the first to...
  9. siuska


    i escaped motor neuron disease but just found out my neighbor's child has SMA...i did know enough to inquire about the medical center and doc she has (excellent) but, i am at a loss on how to offer support...any suggestions?
  10. Z

    tonuge atrophy

    well i clearly have it i can see it and so can everybody that looks dent in side of tonuge and thining tonuge around the front on the right side,guess my question is as it has developed so quickly and rapidly can it be caused by something other than pbp are als cant find much info on the net...