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Thread: Hereditary Spastic Paraperesis Doctors?

  1. #11
    The motor neuron clinic at Columbia Presbyterian is supposed to be good for HSP. My doctor is a subspecialist in neuromuscular and still wants me to consult with them. They are trying to decide if I have HSP on crack or a new genetic cause for PLS.

  2. #12
    Can I ask something? And I mean this with all sweetness and sincerity...

    What would a clinic that's good with HSP be good for? Is it just diagnosing?

    I have HSP too, and my doctor just diagnosed me and sent me home. Now they want me to come in for a 6 month follow up, and I don't see why I should go.

    I bought myself a wheelchair, and I've had a lot of adapting to do, but that's not something he can help with.

    I mean, are there treatments, or anything at all they can do to help? What, other than diagnosing, would a person travel to an HSP clinic for?

    Thanks for the help and information. :-)

  3. #13
    Here's what I mean:

    SCI Nurse wrote (earlier on this thread):

    "Most neurologists are familiar with making the diagnosis, and most physiatrists would be experienced in management and care."

    I did the neurologist part. Was I then supposed to find a physiatrist? I've never even heard of them.

    And exactly what management and care is there?

    My neurologist gave me neurotonin for the spasms. I just figured that was all they could do.

    Is there more? Should I go find a physiatrist? Would that help get me out of this wheelchair?

  4. #14
    Senior Member wheeliecoach's Avatar
    Join Date
    Dec 2005
    East Haven, CT
    When I was diagnosed with PLS, I started seeing a physiatrist. He helps with medication, chair perscriptions, braces, etc. He also keeps track of my progressions, and finds other meds that may help. They (at least mine) are more personable and can tell if I am in a progression sometimes before I do.
    "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

  5. #15
    Just because someone has a progressive disease does not mean that nothing can be done to manage and minimize impairments. This tends to be the mindset of neurologists who have no rehabilitation training.

    A physiatrist is a specialist in physical medicine and rehabilitation. They are expert in knowing how therapy (PT, OT, etc.) may or may not help with a particular deficit, and also in prescribing these interventions, as well as helping with management of issues such as spasticity (which can change), neuropathic pain, etc. Some do primary care, others will see you perhaps annually for an evaluation of your disability as mentioned above.

    You can find a physiatrist in your area here:


  6. #16
    Thank you so much, SCI Nurse and wheelie coach, for this advice. I'll definitely get on this and go find myself a physiatrist. :-)

    My arms are getting weaker as my disease travels up my spinal cord, so I've been wanting to look into getting e-motion wheels. I'm going to need the help of a physicatrist to get them. I knew I needed someone's help, I just didn't know who, or how to find them. Thanks so much!!

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