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  1. Kristina1

    severe back pain

    Hi everyone. I recently traveled to visit my brother out of state. Since coming back, I have had severe mid-low back pain. I believe it was caused by the way I was sitting while traveling and my weakness in the muscles that support your posture when you sit. On the day I came home I was in a...
  2. swalker

    Another Unsuccessful Trip for Wheelchair Repair

    I feel bad ranting a bit here, but will anyway:). My primary wheelchair, the Permobil C500s VS, had extensive work in December of 2017 (over $11,000). That was covered by insurance, but I had to pay a substantial deductible/copay. At that time, they were supposed to replace the motors...
    • swalker
    • Thread
    • back battery diagnosed driving early flu hours insurance permobil trip wheelchair work wrong
    • Replies: 5
    • Forum: Rants and raves
  3. pdcraig

    What now? part 2

    It's late, can't sleep. Just rambing, trying to put some thoughts in order. I can't believe it's been 4 months since Ferd died. It feels like I haven't seen him in forever, like it's been so much longer. And then I think it's only been 4 months, that's why this still feels so raw. I'm back at...
    • pdcraig
    • Thread
    • back cals cold death eating equipment family flu food free grief healing hearing hours life lonely pain reading sleep walker wheelchair work
    • Replies: 10
    • Forum: Past caregivers
  4. swalker

    Spring Grand Canyon Trip

    We went to the Grand Canyon for a week at the end of April. It has taken forever to get through the pictures and get them ready to share with you. The trip was wonderful and the weather was really very nice. The only real issue we had was the batteries in my wheelchair were "replaced" at the...
  5. M

    Several Issues, Need advice

    Hi. I am 37 to make who has developed a lot of twitching and muscle pain in the past few months. I herniated a disc in my lower back last December, so I have had lots of sciatic pain/leg and foot numbness and tingling from that. I developed severe anxiety and started having panic attacks this...
    • mnjwyman
    • Thread
    • advice als anxiety back bed brain burning clean emg cold early emg exercise fibromyalgia foot headaches hours issues misdiagnosis mnd mri muscle muscle pain night pain phlegm sleep symptoms twitch twitching voice weakness worry wrist
    • Replies: 26
    • Forum: Could this be ALS?
  6. lgelb

    Arimoclomol trial now recruiting

    List of sites here Must be within 18 months of diagnosis, have an FRS of at least 35 and erect SVC% predicted equal to or above 80% at screening, and not use BiPAP more than 2 hours while awake. The trial recruitment page is not as clear as the NIH entry on those criteria.
  7. Bestfriends14

    Problematic in-laws

    Hello, I would like to get some feedback on an issues that my poor husband has faced with his parents. In short, his parents took off and moved 4 hours away when my husband was in a bad way from a clinical trial he was on. They didn't tell him they were moving, and after 8 days of them being...
  8. Kristina1

    Pulse oxygen question

    I was under the impression from reading on this forum that breathing problem in ALS don't affect oxygen saturation, only CO2. Was at the hospital for several hours today to deal with a port issue. The nurse noticed my oxygen saturation would go down to the 80s (lowest was 81) then a few...
  9. L

    Biking again!

    My dear friend has been in ICU for roughly two months as we negotiate all the issues with finding care and housing for him, but we are almost there. He has been understandably depressed, but hesitant to try new things to help improve his mood. He has lost the ability to use his hands and lower...
    • Libbyc
    • Thread
    • ability bed bipap depressed eye foot friend happiness hours housing symptoms wanted
    • Replies: 5
    • Forum: Stories of hope
  10. J

    Pretty scared. Another EMG upcoming

    Hello, My story begins in January or February of this year. My left foot would fall asleep very quickly and that leg was numb. I'd had a previous dvt and high d-dimer, but no clot was found in that leg on Feb 1. I began to have long periods where my heart would race and pound hard for no...
    • jab1023
    • Thread
    • als back bed brain bulbar cdc coughing diagnosed emg foot heart hours lyme lyme disease muscles neurologist normal emg ohio onset scared speech story surgery swallowing symptoms tongue twitch twitching worried worried about als wrong
    • Replies: 20
    • Forum: Could this be ALS?
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