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  • oooops i just posted on my own page back to you ...silly me lololol .... thank you so much i have just found the untangled site for als... so helpful -you gem
    Hi Beauti,

    Good day. I saw in one of your posts that you have twitching before weakness. And that EMG were clean only to have it "dirty" a few months later. I got a clean EMG just this Wednesday. The neurologists test both my legs and left arm. all were negative. I dont have other symptoms other than twitching. Did you only have twitching as his first symptom or there are other things? Was it Bulbar onset? thanks a lot and praying for you

    anxious06
    I immediately thought of Rudolph as a name when I read your description of your scooter. I am envious!! I asked for a scooter (not a pwc) from my local ALSA & they only have pwc. I am waiting for my local MDA/ALS to see if they have a scooter.
    Beauti,
    You haven't been on in a while. Just checking to see if everything is okay. Let someone know, if you can, please.
    Toto
    Your Welcome, I have never heard of Kroger, must be powerfull stuff to do that, maybe you should switch to something less violent to your body. Equate brand is 360 calories and taste like choclate milk w/nutrients. I really dont ever feel like eating, I use to wan tto eat but couldn't so's not to get fat...Now they say get Fat....where is the normal...LOL.
    Hi Itbeauti, It is used on almost anything you mix up, from egg salad for sandwiches to smoothies. There are many to choose from I have Pure Green Protein, vanilla flavor by Vibrant Health. I use a scoop that comes in container. I also eat ZONE bars, and drink Equate (same as ensure, walmart brand much cheaper). Hope you can gain weight also....I'll send some brownies your way...LOL...{{HUG}}
    Hello from Midlothian! Sorry to meet in this way, but feel free to look me up if you ever need an ear! michelleturner.rn at gmail.com.
    I Itb, I just read what you wrote about your progression. Can I ask if you think you had a "quick" diagnosis and if you think you had a fairly linear progression? I was diagnosed 9 months ago and they expected rapid progress, so far it's not been the case and while I have had progress in the bulbar area nothing elsewhere to date. Thanks. Sally
    Yes, I have talked with Sara. I haven't been to the spport group yet for purely slefish. While I intellectually know what lies ahead of me, I find being around other PALS (like at clinic) terrifying on a purely emothional one. I am a really slow progressor with only one hand and one ankle seriously affected. Maybe I just want to hold onto a fantasy of never being completely handicapped by this demon. Add to that, I have never was a big fan of support grooups. Last one I wnet to was 35 years ago, when my Dad was drinking, and I foundit not helpful.

    Do you go to the clinic at UVA? I really love Ted Burns. He suspected ALS on 2009 but didn't say anything until he was absolutely sure.

    Good luck, and we should have sunshine this afternoon!
    Just checking in with you Lisa....How are you doing? ( I really want to know!)

    I got kind of lost in keeping tract of who has finished their letters. So will you fill me in?
    If you have finished please send me a copy of the letter, ok?

    Also I am reaching out to people who have wanted to help us in other ways.
    Do you have a couple of hours a week you can volunteer with us?
    We have so much to do and few people to do it.
    But I understand if it is too much. We all have full plates these days.
    Love and ((hugs))
    sharon

    ps could you send me an email? [email protected] (middle initial is L)
    Hello Lisa, just checking in with you to see about your letter to ALSA. Did you email us? Ed gets all the emails so I am not sure. If you are still interested let me know. Thanks. Hope you are doing well.
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