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♥ lgelb lgelb is offline

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Visitor Messages

Showing Visitor Messages 1 to 10 of 126
  1. KiraM
    09-13-2018 08:34 PM - permalink
    KiraM
    I try so hard, I really do, but the unknowing is what gets to me. And of course the horrid symptoms. I’d rather know than not know..I just wish my neuro would’ve given me an EMG after seeing my twitching. I told my mother how this is taking over my life and she said she’d get me an EMG, so that I can move on. I’m just hoping for the best. ); thank you Laurie
  2. KiraM
    09-13-2018 12:43 PM - permalink
    KiraM
    I’m not sure how to reply to your message through yours. But thank you Laurie, upon reading countless threads I always see you reassuring people and comforting people. I’m so thankful for that. I’m seeing a therapist at my school today so hopefully that helps. What I hate is that even when I’m feeling relaxed or trying to sleep, the twitches are there, and don’t go away. I guess I just have to wait it out but what worries me is that I do have a feeling of weakness that started in my left leg, to my left arm, to my left side of neck, to my right leg. What scares me is that the arm with the least amount of twitching (right arm) feels normal. I’m just scared of what’s to come, I wait for a morning with improvement but have yet to have one..
  3. spacecowboy000
    08-14-2018 12:11 PM - permalink
    spacecowboy000
    Hey Laurie....I wanted to know if I could pm you about a family member...
  4. madmarlon
    08-06-2018 04:24 AM - permalink
    madmarlon
    Laurie, How do I send PMs to you?
  5. COSister
    08-04-2018 10:09 PM - permalink
    COSister
    Wondering about a neck brace for Kay. Azgirl. Do you have any advice for us? Thanks. Marcia. Kayís sister. COSister. Thanks. My cell (mod removed for privacy).

    Think Kay hasnít wanted one. Fear of choking. Spitting constantly now. So maybe canít be any help?
  6. Jhettinger
    07-24-2018 11:40 AM - permalink
    Jhettinger
    Where do I find my VA R Rating?
  7. spacecowboy000
    06-27-2018 03:12 PM - permalink
    spacecowboy000
    Yeah....no one has heard any of the perceived slurring or sounding nasal (out of my ordinary) except one person....one time...weeks ago, lol. Even then they said it sounded like a slight lisp, not slurring. I figured maybe that it's caused my the muscle tension from my bruxism. The tripping up, pauses, mixing together words happen when I talk fast/trying to keep up with a convo.. Those are normal for anxious people though I assume.

    Then I will start looking for a SLP and start practicing in front of a mirror. :)
  8. spacecowboy000
    06-26-2018 07:36 PM - permalink
    spacecowboy000
    I wanted to thank you again, Laurie. You and the others have really helped me. I have been to a rheumo and he is running tests. So far everything is looking good!! My therapist has been helping with my anxieties but he is on vacay atm :P

    I was curious if you knew though if there is anything I could do to help with my speech? I know that the emg was negative and if I had bulbar it would have shown up considering I had/have been twitching everywhere. Speech therapist maybe? Cause the tripping on words, pausing, leaving stuff out, and mixing words together is making me a bit less social.
  9. NinaP
    06-23-2018 10:48 AM - permalink
    NinaP
    Hey Laurie. Thank u for ur message. I called my neurologist to ask for an appointment and she told me its most likeky from stress and me being upset and very tired. But if i want to can go for a check. Ill wait it out a bit and if it doesnt pass ill go. My tongue moves like crazy in my mouth. I feel it. But truth is im stretching it all tbe time to see if its the same sixe or if it can move normally.
  10. NinaP
    06-22-2018 03:07 AM - permalink
    NinaP
    Hey Laurie. Whats your advice? What should i do? Wait it out? Believing its physological? Or try and search it? Im going to ENT tonight but i think she is not going to find anything. Im so scared. Slurring comes and goes. I have too much saliva and burping almist all day. My neck has mild pain and is tensed and sore. Also it seems like my neck pains when im about to cry. I dont know anymore.

About Me

  • About lgelb
    What's your relationship with ALS/MND?
    I lost a loved one to ALS/MND.
    If diagnosed, when was the diagnosis?
    09/2009
    City
    Seattle
    State or Province
    WA
    Country
    US
    Biography
    My husband, who died November 2014, was born with Marfan syndrome, later had diabetes and ALS
    Occupation
    Exp. in hospitals, clinics, devices, pharma, managed care. MPH, Board-Certified Patient Advocate.

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  • Join Date: 11-05-2009

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