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  1. M

    Pain

    Hi everyone, Ive been on a number of times over the years. My dad has flail arm Als. We are 1.5 years into dx and 3 years onset. Recently he is complaining of neck/shoulder stiffness and pain and some pain in left arm. His neck is not leaning forward, still seems strong. Is anyone experiencing...
  2. M

    Alternative treatments

    Has anyone tried or heard of Radio Electric Asymmetric Conveyer(REAC) as a type of stimulation in dysfunctional motor behavior? Thanks in advance for your time.
  3. M

    Question regarding pain

    Hi everyone, we are 1 yr into a dx of flail arm 3 yrs of symptoms. Left arm is pretty much useless, ocassional swelling in hand. Right arm weak, cannot lift above waist level, hand can still hold a pen and utensil. Dad likes to still do what he can with weak right arm& hand and he has a bit of...
  4. M

    Swelling in extremities

    Hi everyone Is swelling in hands where weakness is present common? In hands that have some finger curling going on? If so, does anyone have suggestions. Thank you kindly in advance for your replies
  5. M

    Finger curling

    Hi all, wondering what causes the finger curling? My dads baby finger has curled and he can only push it open and cant open it otherwise. Any suggestions for this..he tells me he can feel it starting on the ring finger slightly. Thanks for any info or thoughts.
  6. M

    FVC question

    How fast can FVC drop? My dad had a test late June and it was 110%. Over past week, has slight cough and some fatigue. Mid July was checked at ALS clinic and tongue/mouth examined, all normal. I guess my question would be, does this slight cough sound unrelated to ALS since FVC was normal less...
  7. M

    Radicava

    Hi, my dad is looking to start Radicava. He was diagnosed in early May. The neuro was doing blood work and making sure he qualifies for covered treatment. Id like to hear from those on Radicava and what their side effects were. I hear many have hypersensitivity issues to it and im concerned...
  8. M

    Dad recently diagnosed

    Hi everyone, my dad was recently diagnosed with flail arm ALS. He has had it for approx. 2 years. He had a EMG in Feb 2020, NoV 2020 & May 2021. All 3 EMGs showed changes in arms, everywhere else is normal on EMG. The EMGs were not hugely different according to neurologist. Between the 2nd and...
  9. M

    Ivig reactions

    Hi everyone, Has anyone had a bad reaction to ivig. My dad did a treatment in january and did another end of february. Since the february treatment he gas suffered from low blood count and a severe head to toe rash. Treatment has been stopped. So far the rash is not letting up. Anyone heard of...
  10. M

    Progression

    Hi everyone, Thank you in advance for reading. I had a past thread but could not locate it( it was over 6months ago) my questions is in regards to progression. Can you be termed a "slow progressor" and then it speeds up? Or does it generally remain slow? My dad is currently doing a round of...
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