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  • Research Visit in April

    Posted by Amanda on February 11, 2021 at 12:30 pm

    So I have scheduled my next visit to the University of Miami for the pre-fALS study.  It’s always a little overwhelming for me. I spend two days at the hospital. One day having medical test and a second day completing surveys, motor skills tests, and cognitive testing. These are the medical tests

    • Electrodiagnostic tests including electomyography (EMG) and nerve conduction velocity (NCV), evaluating areas that are involved such as the bulbar region, (the head, neck and brain for speech and swallowing), as well as the cervical region (arms, diaphragm), thoracic region (muscles of breathing) and the lumbar region (legs)
    • Blood and urine studies, including high-resolution serum protein electrophoresis, thyroid and parathyroid hormone levels and 24-hour urine collection for heavy metals, in order to rule out any immunological or inflammatory disease.
    •  magnetic resonance imaging (MRI)
    • Spinal tap -I’ve opted out but What do you think?

    What questions should I ask Dr. Benatar this time?  Any suggestions or advice?

     

    Kathy stitz replied 3 years, 5 months ago 3 Members · 2 Replies
  • 2 Replies
  • Richard

    Member
    February 11, 2021 at 2:47 pm

    A definition for those not familiar with the term pre-fALS study:

    Pre-fALS is a prospective natural history and biomarker study of people not yet affected with ALS, but who are at genetic risk for developing ALS.

     

    Possible questions to ask the doctor about fALS:

    What new advancements have been discovered in 2020 or since your last visit?
    What are the expectations for advancements/breakthroughs for 2021?

     

  • Kathy stitz

    Member
    February 11, 2021 at 3:11 pm

    I agree with Richard about the questions to ask the doctor.  My question is always: When will there be a cure for ALS?  It is desperately needed!

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