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  • Good afternoon I have a couple of questions, I hope it isn't an intrusion. I received a notice asking that I don't quote text, and a pop-up that requests me to enable push notifications. Would you tell me what they both mean? Thank you in advance.
    Hi Karen,

    I have been reading fasiculation1 post and I want to check with you first on the rules, as I’m not diagnosed with anything. It’s my understanding I’m not allowed to comment on his post am I allowed to text him as I’m texting you?
    You can message him within his profile but not in his thread.
    Is that a Welsh Terrier? I have one about to turn 11. Please add Painful Legs, Moving Toes if possible to the list of diagnoses on the do I have ALS post...
    He’s an Irish Terrier, but he passed in 2015.
    Thanks for the information on painful legs moving toes.
    And your doggie is very cute and sweet. :) Looks like my son's dog! The best to you.
    Karen, please accept my apologies. I am grateful for your input. I'm very sorry for the way I spoke. It's only because I've been terrified and have created extreme anxiety over this. I didn't understand that you all are bravely battling this disease and you're making a great legacy by helping others on this forum. Thank you for doing that. Respectfully, Lisa
    That is okay, I cannot post on social media about my husband as he has only told a small group of people so far. I am sure as time goes by I will get to know everyone and it will be like a family. So I thought I would start reaching out slowly. Thanks for your advice.
    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
    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
    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.

    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,

    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.
    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.
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