rilutek

  1. C

    diagnosed

    Hi to all, after 5 days stay in ALS clinik in Germany, I was finally diagnosed with bulbar onsen ALS with sensory involment... The professor told me that when the people are young there was more evidence of widespread muscle wasting in onset with sensory stuff.... I also have tongue wasting...
  2. Lkaibel

    Emergency Room Today

    Today, Brian went the Emergency Room because the ALS clinic said his massive, room spinning vertigo attacks starting last night might be a stroke. Well, we spent four hours there and no stroke, no heart attack but they seem to think he has inner ear issues. He was referred to an ENT but we are...
  3. B

    swallowing rilutek with difficulty

    hello all. i have limb onset, can still eat most things, do not want a PEG yet because I am plump and not losing weight. but i cannot swallow pills. so my caregiver grinds up my neudexta and gives it to me with applesauce and that is fine. but if we try the same thing with rilutek, it makes my...
  4. S

    Taking one Day at a time....

    When my Hubby, John, was diagnosed in Jan of this year he was having so many issues....breathing, neck drooping, no muscle in his left hand and arm, so weak couldn't hardly walk, he can't lay down...sleeps in a recliner chair do to his breathing.....was in a wheelchair by May...in a motorized...
  5. Lkaibel

    Rilutek Question

    My husband is going to check in with his Dr, about some facial redness he is experiencing. Honestly, it looks sort of like Rocasea and he has some tendency towards that too. He is concerned it may be related to the Rilutek he is taking. I was wondering if anyone else has seen this develop with...
  6. Lkaibel

    ALS Sucks Even Now

    First, let me say at the moment we are blessed and have little to complain about. Brian wears orthodics and does not walk more than say about a block without rest. Standing is hard on him for sure. He uses a bath chair to do things like wash his hair in the shower because he gets "rubbery" legs...
  7. KimT

    PALS without CALS

    Good morning everyone, I had to cancel my trip up North because I decided to try the lunasin protocol and just got overwhelmed with all that I'm trying to do. I'm worn out to the point that I just don't know where to place my energy and priorities. I'm at a point where I don't know where...
  8. M

    Newly diagnosed

    Hi everyone. I wanted to introduce myself to the forum.. My name is Melissa. I posted a couple months back, or so, in a different section asking "Is This ALS?". Unfortunately for me, my symptoms are progressing in my right limb, and now have noticeable fatigue in my neck and upper back. Typing...
  9. tripete

    Another Nausea/Stomach Question

    I do not take any medications (I stopped Rilutek because of nausea). Recently I have noticed an increased difficulty in swallowing with more choking. I also get stomach cramps and nausea after I eat. I think it might be related to having more difficulties with breathing after I eat, even very...
  10. S

    From a teenage daughter author's point of view

    Hi everyone. My name is Sarah, and I am nineteen years old. The last time I posted on here was about three years ago. My dad was diagnosed with ALS in June 2012, now three years ago. I found out on July 15th, 2012. I found out because I accidentally found a bottle of Rilutek, and I googled what...
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