hsp

  1. S

    Muscle atrophy

    Hi all, I was recently surprised to find that my right leg has atrophied significantly. A pretty big chunk of my gastroc (calf) muscle is suddenly just ... missing. And my whole leg and foot are now much visibly thinner than my other leg. My working diagnosis is HSP, hereditary spastic...
  2. brayden722

    problems with the pump

    Hi everyone, just came back from a lovely 2 and a half week vacation from the hospital (going to fire my travel agent lol) My baclofen pump catheter kinked or the pump malfunctioned and I went through severe withdrawal symptoms. The pump's alarm only went off once a day and it was so low it...
  3. S

    Progression of UMN symptoms

    Hi, This is a question for the folks with UMN disorders. Could you tell me a little bit about the timeline of how your symptoms have progressed? What started where, and when/how things shifted to other parts of your body? I was provisionally diagnosed with HSP (hereditary spastic paraplegia)...
  4. S

    AFOs

    Hi all, So I met with an orthotist person, and he said I need an AFO for my right leg. It's the kind that goes all the way under the foot, and all the way up the back of the calf and velcros below the knee. Due to spasticity issues, my foot rolls under and turns in, so I end up walking on the...
  5. S

    Experiences with multi-day diagnostic evaluations

    Hi all, I have been winding my way through the diagnostic progress for a few months now, and signs seem to be pointing towards either PLS or HSP. My neuro-muscular doc said she wanted to get another opinion, so she referred me out to the Houston Methodist clinic for their multi-day evaluation...
  6. S

    And then comes the waiting

    Hi all, I posted on the DIHALS board about a month ago about a possible UMN disorder. Since that time, I've received confirmation that I do have some type of UMN dysfunction, likely either HSP or PLS. The other big suspects have been ruled out at this point. My main problem is spasticity in...
  7. IhavePLS

    Neurologists - and why they are so slow to diagnosis!

    Hello to all, It's the strangest of things, actually...in another thread in the PLS forum, Mike from Maine raised the issue of UMN-Dominant ALS, asking whether PLS and ALS are part of a continuum -- or if they are separate diseases. After all of my postings in that thread (admittedly, I do...
  8. Mike in Maine

    New with a question

    Good morning, I’m new to the forum and this is my first post (been a reader for a while). A little about myself, I’m a 30 year Navy vet, was a big runner and gym rat before all this started about 5 years ago, it is amazing to see the drop in activity. Now just weed whacking the yard causes...
  9. L

    Worrisome new symptoms

    Hello everyone. I haven't posted for a while, but have been reading and learning. I really appreciate all the kind knowledgable people who contribute. I was diagnosed as probably PLs, maybe Hsp last fall with UMN symptoms in legs, signs of increased reflexivity in arms, clear MRIs, and a clear...
  10. M

    update. normalish emg etc.

    I posted a few threads a while ago as I am in the process of looking for a diagnosis. My neurologist thought from the start that my condition is likely genetic and that is still the case. They thought it likely that I have a rare type of charcot Marie tooth or a rare type of hereditary spastic...
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