hsp

  1. Craig Mattice

    Found this Forum by Referral of Existing Member

    Well, my situation is a tad different than some people in this forum. I am home bound due to total disability from Hereditary Spastic Paraplegia or HSP. It is a serious deteriorating motor neuron disease that has no treatment or cure and only continues to get worse in degeneration of the...
    • Craig Mattice
    • Thread
    • als craig mattice cure diagnosed diagnosis disability free hope hsp ice motor neuron disease movtivation paraplegia progression questions social security stroke testing treatment update
    • Replies: 6
    • Forum: New members
  2. Geo

    Some Thaughts on Viruses and Proteins

    Just a few Thaughts on The Subject of Viruses and Proteins . I reading alot about SOD 1 Mutation ,HSP27 ,Proteins ,Protein Aggregation and our Disease . Also im reading alot on Viruses and what they do . They attach to a Host (Humans) ,they have Proteins on the Surface to attach to a host ,They...
  3. Just J

    Neuro offers possibilities...

    My husbands mobility has declined for 3 yrs and now uses a cane to walk. Sitting is a problem too and needs to lay down for most of the day. Until now we had no possibilities of a diagnosis. It just felt like a waiting game. Anyway, 2 weeks ago we went to new Neuro at Johns Hopkins...
    • Just J
    • Thread
    • als brain diagnosis family family history hope hsp life mobility pls problem quality of life spastic paraparesis tests treatments unsure young
    • Replies: 3
    • Forum: Could this be ALS?
  4. Just J

    May be PLS...

    After 3 years of continued progression and no answers we finally have some possibilities. Two weeks ago my husband went to Johns Hopkins and met with new Neruo. Possibilities are PPMS, PLS, or HSP. Even though I knew from my own research these were possibilities this is the first doctor that has...
  5. KANSASTOM

    Why?

    If you have only lower motor neuron involvement, then you have Spinal Muscular Atrophy, a pure motor neuropathy or some sort of other lmn disease. From what I have been reading these are disabling but not fatal. If you have pure upper motor neuron involvement then you have HSP or PLS and both of...
  6. Just J

    HSP (Hereditary Spastic Paraplegia)

    Is there anyone out there awaiting diagnosed who have looked into HSP or doctor mentioned symptoms were like HSP? My husbands symptoms were compared to this but no diagnosed of HSP (not ruled out yet). Would rather be HSP then ALS ~ J.
  7. Just J

    Get your medical records!

    I would like to urge anyone who is awaiting diagnosed to request copies of their med records from any doctor who you have seen. Read them, study them, save them. My husband is preparing for appointment with Johns Hopkins and in doing so we have gathered nearly 100 pages of medical records from 4...
  8. M

    Recent patent; treatment

    Has anyone seen or tried this...? Sorry for the extensive length. Hope I didn't break any rules by copying/pasting it on here. http://www.wipo.int/pctdb/en/wo.jsp?WO=2008021970 Thanks. Mike TREATMENT OF MOTOR NEURON DISEASE, INCLUDING CERTAIN NEUROLOGICAL DISORDERS, MOTOR NEUROPATHIES...
    • mikej2323
    • Thread
    • abdominal age als atrophy autoimmune balance cell clinical clonus cramps denervation diabetes diagnosed diagnosis eyes fasciculations fatigue fda female headaches health heart hope hours hsp immunoglobulin improvement information insurance lou gehrig's disease magnesium media mental health motor neuron disease movement mri muscle muscle weakness muscles myasthenia gravis night pain paralysis progression respiratory respiratory failure slurred speech speech supplement support switches symptoms symptoms of als tests therapy thumb toxicity tracheostomy treatment treatments unknown ventilator vitamins weakness wrist
    • Replies: 2
    • Forum: General discussion about ALS/MND
  9. M

    question on vertigo....

    Hi,like i have said before my diagnoses is actually HSP,but i was wondering .do any of you have bouts of vertigo? I am having it today and last night in the bed,horrible,feels like the world is spinning when it does it and like im falling,not a very good feeling.........thanks,Michelle
  10. P

    New developments

    I am a little confused about two appointments that I just had last week. My primary neurologist gave me a "probable PLS" diagnosis, and the neurologist that he sent me to for a 2nd opinion gave me a "probable HSP" diagnosis. I know these two diseases may have similar symptoms, but they have two...
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