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notme
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  • I read your "sticky" about "Muscle Fatigue vs Weakness" and found it very interesting and informative. You stated that weakness was being unable to lift your arm, unable to lift your leg, unable to stand on your tippy toes, unable to hold something or push a button... but didn't it start with noticeable fatigue progressively getting worse? Or, did it happen practically overnight or within days? I have been to the ALS Clinic at Duke University for tests. No diagnosis as of yet BUT the doctor would not rule out ALS.
    My neuro doctor will not rule it out as of yet either. I'm a new member, posted "Beginning the journey.'
    Add me to the list of people checking up on you. I tried PM'ing but your inbox is full. Alot of people miss your wisdom and empathy. I hope you're doing okay and decide to pop back in once in a while. Take care.
    Hi,it was me who wrote fb message as we were so very worried.
    Please dont let anyone push you away,we love you and need you here.
    I am relieved you are ok,thankyou for getting in touch.
    {{{hugs}}}caroline.
    Hi Patty, will you PM next time you are on? I am worrying a bout you. and miss you too!
    I miss your fairness and tenderness on each one of your posts here.
    We really miss you, my friend. Hope to see you back soon.
    Hi Patty

    Been worried about you. Hope to hear from you soon. Love ya. Miss ya.
    Hi patty.
    I have not been on the forum for some weeks and noticed you have not also.
    Is everything ok? I hope nothing serious has happened.
    Please get in touch as soon as your able and let me know.
    I can not pm you as your pm box is full up.
    Miss you (((hugs)))caroline.
    Hi Patty, was just thinking that you have been very quiet lately. hope all is OK. Some of the crazies have been needing to talk to you...
    Hey there my friend!

    Don't you even think of leavin' dahlin'. You are the patient and caring voice of reason around here. Plus you know your medical stuff! Not sure what Jerry is upset about, but I'm optimistic he will get back to his nice self one day soon.
    Patty,i don't know whats going on with jerry its not like him.
    Please just ignore him and lets get back to normal.........we dont want to loose you sweetie,i refuse to let that happen. I was going to leave when i was bullied but would not give them the satisfaction,dont you honey. {{{hugs}}}caz
    Hey there, Notme....When I had my second-opinion-diagnosis of PLS (at Johns Hopkins in Baltimore, Md in 2005) the muscle expert there (Dr. Corse)told me my prognosis was good and to take Rilutek (I took it that she meant my prognosis was good WITH Rilutek). PLS seems to be a "sister" disease to ALS and since it helps an ALSer survive longer (3 mo. or so) I assumed, they believe, it would help a PLSer even more. "Scientists believe excessive exposure to glutamate MAY be one of the reasons that nerve cells (motor neurons) die in ALS patients." This statement was in a page I found online with the heading "Glutamate Research Could Lead To ALS Treatment". It also says Rilutek (Riluzole) is the only approved treatment right now, (it is believed to regulate glutamate levels ) though they say the therapeutic benefits of the drug is modest.
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