KarenNWendyn
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  • Thank you for the Acronyms and Abbreviations sticky. Are you able to edit it if there are more words popping up?
    I read ROM and guess in this context that it means range of motion. Am I right?
    Thanks Ted. Best of luck to you with the Radicava. I’m on Riluzole now and seem to be tolerating it so far.
    Karen,
    I am so sorry I missed this message. I am relieved to hear you have a slow progression. I am glad LNM dominance can be slow too. I am happy with Radicava, but I cannot say for sure if it is helping. But doing something feels good. Conceptually, sopping up free radicals in my brain seems wonderful. I wish they would do some wider drug trials to get a more definitive result.
    I tried to take Riluzole but I get an allergic reaction - phlegm in my throat. So I stopped taking it. My wife has enough trouble sleeping without me coughing and clearing my throat!

    I was in Medford many years ago, but not much travel lately. If you ever find yourself in Vancouver, BC I would extend the same offer. Maybe we could get Shiftkicker Fiona too!

    Love to you and Wendy.

    Ted
    Hi Karen,

    I drove south towards you this week (not too close however, only Yakima) and i thought about you. Any plateaus? And any progress on Radicava?
    Hello Karen, I am sorry for you. I have PLS, and I have experienced what you feel. But you get used to it after a while. I have had it since 95, 22 years.
    I'm so sorry to hear about your rapid onset MND. There is a brutal and unfair irony when medical doctors get rare diseases, but I guess we are all human. I've noticed you helping people with their symptoms already on this board, and that is very admirable, especially because of your recent diagnosis. Even now you serve your fellow man. Truly inspirational.
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