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  1. BlsdMama

    Rib Cage Pain

    I get interstitial pain - the muscles between your ribs. It's actually my longest onset symptom pre-dating dropped foot. I think it's actually a muscle spasm of sorts.
  2. BlsdMama

    Constipation

    Add in Digestics. You can find them on Amazon. They'd be in addition to Miralax.
  3. BlsdMama

    PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

    @Statius@ - I'm not sure if I realized you're so close to me, Ed? I'm just outside of Cedar Rapids. @wmilo - I'm not sure how I'd survive without the PWC. Trying to wrap my head around it. Well, I've been an incredibly slow progressor for 5 years. I guess at some point I was bound to have...
  4. BlsdMama

    Accelerated death benefit / life insurance

    I have two policies and both have accelerated death benefit, meaning that I can collect half the policies before I die when I am deemed to have 12 months or less. I've been a very slow progressor, initially diagnosed with PLS, then SPS, then PLS again, and finally 1.5-2 years ago cementing the...
  5. BlsdMama

    Worried

    As I read what you quite, the words, “I feel..” jumped right out at me as very reassuring. Most of us here felt nothing. Feeling and sensation is peripheral nervous system. ALS is Central nervous system. This means we were shocked to have something fail (or fall in my case) because everything...
  6. BlsdMama

    Concerned about early ALS

    Thrilled for the results of your EMG. Benign fasciculations are a real thing and the benign part is especially lovely. ;) I’m coming late in the Q&A, but I, as a super slow professor, has drop foot and tripping falls (pleural) before any twitching so I hope that’s further consolation!
  7. BlsdMama

    fALS and poss FTD?

    Unlikely. My grandmother died of FTD so I was fully tested. Mine is sporadic. My dad and his teen siblings are still all healthy in their 60s and 70s. She can be tested if she is willing and you want to know, but take comfort that familial ALS is only about 10% of cases and even if you inherit...
  8. BlsdMama

    ALS - effects on ability to urinate

    @rmt Oxybutinin works to help the urgency. However, it dries my mouth and throat so much that my speech is inaudible so I rarely take it.
  9. BlsdMama

    ALS - effects on ability to urinate

    I’m also UMN dominant with severe urinary urgency. Interesting this symptom seems predominantly UMN. I’ve had several accidents. I was prescribed something that does seem to help, however it dries out my throat so much that it impairs my ability to speak.
  10. BlsdMama

    Low Air Loss or Alternating Pressure Mattresses

    After much reading on here, I made some calls. The home medical company that ordered my pwc can order InvaCare. I wanted Span America UltraMax. I found a mobility company that can do the UltraMax but he worries that using my bed/mattress purchase on my insurance will affect their willingness...
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