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  1. Clearwater AL

    Good info for BiPaps....

    A lot of valuable information is being posted in the… “First visit to a Pulmonologist in a few days.” concerning CO2 build up and BiPaps. We are lucky to have Igelb (Laurie). I’ve learned a lot from her postings over the months concerning my BiPap. I put it here not to distract the flow of...
  2. KimT

    Dentist

    Today I had my remaining crown replaced with a temporary. In two weeks I'll go back for the permanent. The last thing I wanted to happen was for a cracked crown to break off when I'm not as mobile as now so I had it done. They had all the info in my chart and there was a new dentist only 28...
  3. D

    My symptoms

    Hello I have read all the things I should before posting so please just hear me out as I have done a lot of research. First of all let me just say I am proud of everyone in here who has dealt with this horrible disease, now I know twitching isn’t a sign of als but can come along with it. My main...
  4. W

    @Nikki J

    Sorry to ask but im a worried mother trying to understand this. ive been researching emg studies and if you look on the emg my sons recruitment patterns are all normal and to my understanding in MND or ALS even in early stages they would be abnormal recruitment patterns? Also same with Duration...
  5. K

    Left Leg Anomalies

    Hi All First of all thank you for all of your support and taking the time to answer our questions and helping us understand what to make of our symptoms. My situation started in early January where I was having sharp, pin like pain in my left thigh - I blamed it on exercise at first but now...
  6. T

    Ques. on Brainstorm (NurOwn Trial)

    Hello: I am a cALS for my husband. I have questions about the Brainstorm Cell Therapeutics (Trial of NurOwn for ALS): 1) What are the pros and cons of this trial? 2) It seems to have promising anecdotal info. -- why aren't more people doing it? 3) When will results be published? 4) When could...
  7. Bestfriends14

    Leap2bfit

    Hi all, The above protein/energy drink has been touted as a miracle drink for those with ALS. So much so that it claims that out of 250 people, half had symptoms stopped or reversed. It's been heavily pushed on an fb group site where they are now asking for money in order to "gift" two months...
  8. P

    One week since diagnosis...

    My girlfriend was told that her symptoms are consistent with ALS a week ago at Mass General Hospital. As I stated in previous posts I have known for a while...and her dirty EMG sent us to Boston for the second opinion/confirmation. The first few days were spent crying/ holding her. She now...
  9. S

    Edaravone feedback on its effectiveness

    Hi first time on this forum. Seamus from Ireland diagnosed1year but symptoms about 4 years, 49 married 4 kids. What I would like to ask people is about Edaravone. It has been in use in the US since 2017. It is not available in Europe yet but there is a large clinical trial this year on the oral...
  10. K

    BiPap: Possible to Have Too Much Air?

    My 87 year old mother just got her BiPap machine four days ago. Therapist set it up for her, and the rental unit relays info by wifi to the therapist's office, and he can control it remotely. She felt like it was blowing air too harshly into her lungs over the weekend, and I asked him to dial...
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