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KarenNWendyn KarenNWendyn is offline

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Visitor Messages

Showing Visitor Messages 1 to 10 of 14
  1. Ml1212
    06-25-2018 07:51 PM - permalink
    Ml1212
    ed my muscles would fatigue more easily then normal but my weights were pretty similar as before.
    Fast foward to this summer i have gotten tests for everything from autoimmune-deficiency’s-thyroid-lymes you name it. I googled why symptoms and saw these could be from als. The last month i have had severe muscle twitching everyday. Muscle pain and tightness throughout my body. I also feel as if Im not balanced when i walk And my hands are clumsy. This only happens after i began to fear als so it could be anxiety. My neuro did a clinical exam and said I passed with flying colors and my pcp agrees but they can’t find anything else. I️ am wondering if you think it’s worth pushing for an emg?
    Thank you so much for reading god bless you and all you do
  2. Ml1212
    06-25-2018 07:49 PM - permalink
    Ml1212
    Hello Karen, I have read countless posts on these ALS forums and for one wanted to thank you for being so knowledgeable and helping people. I was wondering the best place to donate to ALS research as I plan to do that tonight.
    I would like to share my worries with you and see if you have any thoughts on them (I really do value your opinion).
    It all started last year where I lost control of the muscle of my anal sphincter as it was in a constant spasm. It lead to constipation but I learned to live with it. During the year I️ began to develop muscle stiffness in my back and my neck that did subside for a little then came back and still hasn’t left. I have to crack my neck and back countless times throughout the day. I also noticed during the school year that I a few muscle twiches when i would lie down before bed but I ignored it and didn’t think much of it. I also would get random bouts of fatigue as if I had a flu. I am an avid weight and have been my whole life and notic
  3. swalker
    05-20-2018 12:50 PM - permalink
    swalker
    Sorry to be so tardy in responding. I don't check visitor messages often.

    No, I don't use bipap. I do use nighttime oxygen. I have had lengthy discussions with my pulmonologist on this topic.

    One thing to be aware of is that I have not been diagnosed with ALS. I have been diagnosed with MND-other and told to expect it to follow the same path as ALS.

    Steve
  4. ShiftKicker
    02-21-2018 07:48 PM - permalink
    ♥ ShiftKicker
    Will do, thx
  5. Tedstehr
    02-20-2018 11:45 PM - permalink
    Tedstehr
    Hi Karen,
    Just checking in with you. I hope you are holding up. It really is too much to bear isn’t it? Last I heard you are still walking. I am too but I need a wall at the very least, or two canes but a walker is best. Some days I think a wheelchair would take away a lot of unneeded drama - you can only come close to falling so many times before you decide to stay seated.

    Hi to Wendy too,

    Ted
  6. Herdaughter
    01-22-2018 01:44 PM - permalink
    Herdaughter
    That would be fun. Both of my parents graduated from Southern Oregon as did my step-daughter so my husband and I have enjoyed the area frequently. My stepdaughter actually lived in Talent while finishing up school.
  7. Herdaughter
    01-21-2018 04:13 PM - permalink
    Herdaughter
    Hi Karen,
    Are you getting treatment in Southern Oregon or are you coming up to Portland for clinic? My mom sees doctor Goslin at Providence Portland and thought it would be nice to meet you guys in person if you were there at the same time. I hope you are doing ok.
    Megan
  8. wishmobbing
    12-30-2017 02:50 PM - permalink
    wishmobbing
    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?
  9. KarenNWendyn
    12-16-2017 11:51 AM - permalink
    KarenNWendyn
    Thanks Ted. Best of luck to you with the Radicava. I’m on Riluzole now and seem to be tolerating it so far.
  10. Tedstehr
    12-16-2017 03:25 AM - permalink
    Tedstehr
    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

About Me

  • About KarenNWendyn
    What's your relationship with ALS/MND?
    I have been diagnosed with ALS.
    If diagnosed, when was the diagnosis?
    07/2017
    City
    Southern Oregon
    State or Province
    Oregon
    Country
    US
    Occupation
    Retired rheumatologist (MD)
    Interests
    Playing bassoon
  • Signature
    Karen

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  • Last Activity: Yesterday 06:22 PM
  • Join Date: 07-29-2017

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