hsp

  1. P

    Facial spasm/cramp

    Have not posted in quite a while, mainly because I still don't have a diagnosis. Probably pls or hsp.....not that it makes much difference. I'm thinking pls as I have upper extremity involvement. Anyway, my question is this. I have for the past three months bee experiencing facial spasm or...
  2. D

    new Upper MND diagnosis

    Hey everyone, I was just diagnosed today with upper motor neuron disease. I have been sent to a different team of doctors to get genetic testing to rule out HSP, so if it's not that, then I'm looking at PLS. I'm only 28 years old, and from everything I've read about PLS, a diagnosis is...
  3. S

    Back to the NIH

    Hi all, Well, as my title suggests, I'm headed back to the National Institutes of Health tomorrow in Washington, DC. As many of you know, I was originally diagnosed with the upper motor neuron disorder, hereditary spastic paraplegia, but a change in symptoms, no family history, and ambiguous...
  4. S

    In Michigan for opinion number ... six?

    Hi all, As I've mentioned here before, I've been trying to pin down a definitive diagnosis for the past two years or so. I was diagnosed with hereditary spastic paraplegia at Houston Methodist, but I don't have a family history or clear genetic evidence. My symptoms have changed a lot...
  5. Nikki J

    Facebook group

    For those of you who have not yet found it there is a group that posts research articles on MND there is probably more on PLS and HSP than ALS If you are interested either indicate below or pm me and I will pm you a link. It is a closed group and once you ask to join expect a pm ( check message...
  6. S

    Back on the diagnostic merry-go-round

    Hi all, As many of you know, I was diagnosed with Hereditary Spastic Paraplegia last summer. The only definitive way to diagnose it is through genetic testing, which I had done recently. My results did show a mutation, but it was a rare one of "unknown certainty". So, it might be the...
  7. BlueTrain

    First Post - Not Yet Diagnosed

    Mod note: this member's journey has caused much concern among those worried about ALS. It is extremely important to note that his initial clinical exam was very abnormal ( far more so than brisk reflexes alone which can be normal). It was clear from the start that he had upper motor neuron...
  8. S

    Heading to HSP/PLS conference in Seattle

    Hi All, Well, as my title suggests, I am about to head to Seattle for the Spastic Paraplegia Foundation's conference on HSP and PLS. I am excited about meeting other people with these disorders (mine is presumably HSP), but I am also nervous about seeing what "the future" might look like for...
  9. S

    It's all starting to catch up with me

    Hi all, Well, as my title suggests, everything's really starting to catch up with me since being diagnosed with HSP last summer. For those who don't know, hereditary spastic paraplegia is a pure upper motor neuron disorder. HSP is not fatal, generally moves slowly and mostly affects the legs...
  10. Nikki J

    Rare disease registry

    This is for people with PLS and HSP as well as ALS It is not geographically restricted. You will be notified of clinical research opportunities related to your disease. It seems like it might be a way of making your disease a little more visible as well. It is not signing you up or otherwise...
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