Recent content by reebabs

  1. R

    new to PLS questions

    I am back from Cleveland Clinic and Dr Pioro does not think I have ALS or PLS. I am not presenting with classic symptoms, I think the arm and tongue tingling part. He did not think the leg was showing spasticity. The emg was done on my whole right side, not just my leg. I was probably poked...
  2. R

    not good. im scared.

    Also, sounds like it could be both Charcot Marie tooth and another disorder either MS, HSP or Pls. I have seen CMT and some of your symptoms sound like it.
  3. R

    not good. im scared.

    it is scary to have so many symptoms and few answers. And it is scary to have a new baby. It is wonderful you've been able to devote your time and energy to your baby under these circumstances. Babies can at times be a bright spot in a dark time. I find that these health problems can put...
  4. R

    thank you both for this info. There is so much info to read to stay informed. And I agree with...

    thank you both for this info. There is so much info to read to stay informed. And I agree with you about patience.
  5. R

    new to PLS questions

    thanks. I am doing as well as can be expected. I will want very much to stay active. I had a lot of sadness last time I rode my bike, thinking about the prospect of losing the ability to ride. I had a back brace in high school for 4 yrs and my one hour a day out of it was spent on a bike...
  6. R

    I am new but someone said you knew a lot about MS. I was recently told I was a "probable PLS"...

    I am new but someone said you knew a lot about MS. I was recently told I was a "probable PLS", after one yr of symptoms. Regarding MS: I read that 5% of MS patients had normal MRI's in the beginning. There is something inconsistent at my last neuro (well respected in MI) he said I do not have...
  7. R

    You mentioned Aly has more info on MS than anyone, I have a MS question, and I don't know how to...

    You mentioned Aly has more info on MS than anyone, I have a MS question, and I don't know how to send a message to her. can you get me a link?
  8. R

    new to PLS questions

    dr said: the brisk reflexes and spasticity were what led him to believe it was a "spinal cord disease" he's a specialist in peripheral nerves, I am traveling a distance to see him and people come from all over the state to see him. I think he teaches at U of M neurology. I would think he'd...
  9. R

    new to PLS questions

    I have had a head and spine MRI and they were normal except a very tiny white spot 2mm on cervical spine. he wants me to repeat MRi there in March to watch it. The written report said it was normal but another dr looked at it and said it might be something significant. I had an EMG in Sept...
  10. R

    I responded to your post re: undiagnosed PLS. not sure you'll see it now. if you would...

    I responded to your post re: undiagnosed PLS. not sure you'll see it now. if you would re-consider the questions.
  11. R

    I responded to your post re: undiagnosed PLS. not sure you'll see it now. if you would...

    I responded to your post re: undiagnosed PLS. not sure you'll see it now. if you would re-consider the questions.
  12. R

    new to PLS questions

    after that appt, I scoured the internet to understand better, from scholarly articles, to posts on this forum. Got more scared and confused. your post, about 3 A's of upper motor neuron helped me a great deal, had not seen that explained in that clarity. Thank you. Neur said "probably not"...
  13. R

    new to PLS questions

    clarifying....those are my questions that are not being answered by my neuro. by phone... at last appt, I pressed for a diagnosis to explain why I cannot walk, he gave me very litttle explanation/info besides probably pls. I didn't know what that was so did not know what to ask. (Other...
  14. R

    new to PLS questions

    1. how long do your neurologists take to respond to phoned/questions in between appts scheduled 3 months apart? (mine has taken 2 weeks + more than once, don't think this is right) 2. I have random twitches that are not visible. Is there a difference between twitches with ALS and those of...
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