als

  1. M

    Could this be ALS?

    Hi it’s been a while since I last posted. I have been still progressively. Getting worse I recently had an another opinion at st Luke’s in kc mo. I had a EMG on only my leg muscles it was very painful the neurologist wouldn’t say yes or no to ALS. Said he wanted to schedule me for my arms next...
  2. L

    Our recent ALS Adventure

    My PALS, Chuck, was diagnosed in June 2021. His progression has been very slow during this time with mainly loss of mobility in his legs. All along his lung function numbers have been 85-89%. In May, he timed out of the COMBAT trial with ibudilast. A month later, he started on the Healey...
  3. S

    Unfortunately, ALS was confirmed

    good morning, I haven't written for a long time, I wanted to ask at the beginning if I can move my thread to the section where there are people with a diagnosis - because I already have a diagnosis of G12.2 I was recently examined by a neurologist and compared to the last very thorough...
  4. Clearwater AL

    Sandra Bullocks' long time partner passes from ALS.

    Actress Sandra Bullocks’ long time partner, Bryan Randall passed away peacefully” following a private three-year battle with ALS, Bryan chose early to keep his journey with ALS private and those of us who cared for him did our best to honor his request,” They used the word "Journey" like we...
  5. A

    Two Friends Diagnosed with ALS at about the same time??

    Hello everyone. I posted here a few months ago about my best friend who was diagnosed with ALS in January (limb onset, C9 positive). He is handling it well but, unfortunately, the progression is more rapid than we had hoped. He has now completely lost the use of his right arm, is having great...
  6. G

    Traveling with ALS family member.

    My brother who was diagnosed with progressive bulbar ALS OCT 2022 will be flying to Las Vegas with family for our family reunion. Most likely his last trip. We have a wheelchair for him and he will bring his ventilator and nebulizer. His tube feedings will be sent ahead to a family member...
  7. Tomswife

    Physical Therapy for ALS

    I have been thinking and reminiscing about physical therapy. After dx Tom was referred for PT. The referral from the neurologist at the clinic did not provide much specific advice. I had difficulty finding a PT provider with MND experience. I was walking the dog one day and a neighbor...
  8. M

    Could this be ALS area of forum

    I feel strongly that this section of the forum should be discontinued. That or moderated far more strictly so that only those with genuine reasons for concern get their posts published and discussed and supported etc. The first time I posted on this forum was in that area, and that was only...
  9. Nikki J

    Nutrition and ALS webinar

    The CCALS topic for May. It looks like it is going to be about tube feeding - particularly Liquid Hope. It may be somewhat commercial but the concept of real food versus chemical formulas is something we talk about here a lot...
  10. M

    Could this be ALS?

    I have posted few times before. Sorry for posting again. I have muscle weakness, twitching, muscle atrophy, bad breathing problems. And I have new symptom that feels like my muscles. Are been paralyzed. They are extremely weak very weird weakness feeling. Can barely move them I know longer have...
Back
Top