amyst
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  • Hello my dear
    my name is lussy i was browsing today, so i came across your profile on it seams like some thing touched me, i started having some feelings in me which i have never experience in my life before, that is why i write to you, i will also like to know you the more, and i want you to send an email to my email address so i can give you my picture for you to know whom i am.Here is my email address ([email protected])I believe we can move from here! Remember the distance or color does not matter but love matters a lot in life) Am waiting for your immediate response i love you with faith and trust. Miss lussy. you can send me your email also pls
    Hello....just a note to say HI.....I am doing ok but getting weaker.....this Thursday is my big day....I go see Dr Donofrio at Vandy.....just wanted to check in and say I hope things are going as well as possible for you....I have not seen much of you lately on the forums....I hope things have not gotten too bad....cheers......fp
    Hi Amy, I popped in and saw that you are in Middle Tennessee. My sister Vickey has ALS and goes to the Vanderbilt Clinic in Nashville. I am one of her CALs, and if I can help in anyway I will be glad to do that. I can answer questions for you about the clinic concerning your PWC. My sister's insurance paid for her wheel chair. It took approximately 6 months for her to get one. She was able to use a PWC from the loaner closet at Vanderbilt. Right now she has a hoyer lift which is a loaner from Vanderbilt. Penny Powers the PT at the ALS Clinic is superb in helping with the PWC as an advocate for you with the insurance company. Sis's chair is AWESOME. Hugs to you. We are in Winchester, Tennessee. Kaye :)
    Thank you.......I guess we are not in this alone......I understand I am to see Dr D on 19 July......when you see him tell him I am so looking forward to meeting him and I am so happy for the Vandy ALS clinic.......He helped a lady named Diane Turner's father......Diane's father died from ALS about a year ago I believe......Diane has been helping me chart my course.....providing me with some contacts.........all the best......keep in touch.......we will fight this together........stay strong......you and your family are in my prayers.......cheers......fp
    Give yourself some time to digest the news.... believe it or not, there comes a time when it's just your new "normal", and you'll take it day to day. Sending you a hug...
    Hi Amy, just wanted to pop over and welcome you to our forum family... and sorry that you had the diagnosis that brought you here. Remember everyone is different, and the disease has it's own timeline in everyone. I just met a woman who was diagnosed 11 years ago at the MDA/ALS Gala.

    Ask anyone questions about different supplements, hints and tricks, we're here to help each other.
    The EMG will just depend on who did your EMG the first time (if it was a well-known ALS doc) and the clinic's opinion of that doctor. Two of my EMGs were done by a well known ALS doc. The next clinic I tried that was not good enough for the doc (didn't like her anyway, so wasn't staying and wouldn't let her do another one). At my current clinic, the doc didn't make me redo it since she knows the doc that did the EMGs and is content with my desire to never have another one. Aside from the fact that she is very sweet and caring and thorough, this is part of the reason I stuck with her. They are indeed horrible. I have that vasovagal reflex thing where my blood pressure goes very low and sometimes I even pass out when I get stuck with needles... no fun!! Hope all goes well for you!
    Hi Amyst, So sorry you are going through this! I wanted to let you know I tried three ALS clinics before sticking with one. It's smart to try several. Go to both, even if the appts are close together. I think you'll feel better the sooner you can pick just one. Take someone with you to both appts and take notes and ask questions to help you make your decision. Good luck and hope it all goes well! Try not to feel too overwhelmed. Things get better in time! ~ Sarah
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