wanted

  1. A

    Drained

    Just wanted to post some good news. Foot is healing and I should be out of boot in two weeks! Can't wait till back in sneakers. It has been very difficult, but used a knee scooter with basket to get around house. Taking husband to dentist and arranging coverage so I could go to ortho had...
  2. P

    Sincere and utmost apologies. Those worrying please read my post

    Dear Moderators and senior members I express my SINCERE and UTMOST apologies to you all and I ask for forgiveness for my recent irrational behavior and what appeared to be disrespectful actions. I ask that if you want to ban me again its ok but please could you leave this post up for those who...
  3. I

    Responses from the ALS team at UCSF

    Ended up in the ER here in San Francisco for about four hours yesterday for severe dehydration. Ran an IV to rehydrate me, did some basic RT tests. They wanted to keep me and out in an emergency PEG today. After consulting with everyone, decided to have me keep the scheduled appointment today...
  4. T

    No Hospice

    So we are being told that since my sister is on a bipap machine that medicare will not pay for hospice. Some say that they will take her but eventually she will have to come off of it since its "prolonging her life". My question is for the CALS that have gotten hospice. What all do they do for...
  5. C

    Dysphagia/Respitory onset

    Hey guys, first of all, I'm very sorry for all your struggles with ALS and I do not wish anyone to have this terrible disease. About me, I am very scared of ALS for like 3 weeks now. It all started about 9 months ago. I've started having very strong coughing issues while eating/ even drinking...
  6. L

    Jevity via Feeding Tube

    My sister is having an issue with vomiting. I believe it begins with saliva pooling which caused coughing, then gagging which sometimes leads to vomiting (about 3 - 4 times a week). She is taking 2 cans of Jevity via feeding tube around 1 pm and then 1 or 2 cans in the evening around 6 pm. This...
  7. C

    Reference lab negative for Lyme

    Hello I posted back in January with speech difficulty and mild twitching and discomfort in my leg! My symptoms are still there with added discomfort now in my right wrist and palm! My doctor was sure it was Lyme after Elisa test came back positive but the reference lab said there wasn't...
  8. S

    Do you know anybody who did VSED (voluntary stop eating & drinking)

    Hello, I am a CALS--my mother was diagnosed with ALS about 6 weeks ago. She has limb-onset ALS and no longer has the use of her arms. Her legs are getting weaker, so they will go next. Her breathing /swallowing is great. Her respiratory therapist said her respiratory function was "off the...
  9. T

    tongue stuck - lock jaw

    I just wanted to post what we went through yesterday in case anyone has this issue so you know what we did and hope that it might help someone else. This is not something I ever thought would be a problem with ALS. Last night my sister was in distress and we couldn't figure out was wrong, now...
  10. IgorZilio

    Just diagnosed with a LMN disease :/

    Hey guys, I’m 25 years old, brazilian and live in Rio de Janeiro so, sorry if there are some english problems. About a year and a half ago I had a really weird viral infection that evolved to pericarditis and a bunch of other stuff, but I made a full recovery. A few months after, however, I...
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