Recent content by lovelily

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    Update - as promised

    Hi Luke....The hardest part of the disease process is waiting. I had 3 muscle biopsies, + a nerve biopsy before they called me a " very complicated case. " Wonderful. After the final biopsy and 5 pages of explanation, they came up with a suggestive of " Myofibrillar myopathy. " I went in for a...
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    Change of diagnosis

    Fly, sorry about your diagnoses. I have neuro muscular disease, among other issues. My neuro said he cannot promise that it won't change in a few years. Uuug! You are the first person that I have seen, on this site, to go from NMD to MND. I wish you the best on your journey. May God bless you.
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    does muscle biopsy reveal ALS?

    hi filmmaker....I have atrophy from myopathy. Out of 3 biopsies, only one had a mix with denervation.
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    Dr Sivak from Mt Sinai NYC

    Hi! Yes, Rose is correct. I did see Dr. Sivak. I was not impressed with him....out side of the size of his ego. ;) I had come to him with muscle weakness and fatigue. But, he didn't give me the time of day. My Grandfather had passed from the disease, but no diced tomato's. It...
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    lydia......A big HELLO! So many things going on. It's been forever since I have been here.

    lydia......A big HELLO! So many things going on. It's been forever since I have been here.
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    hello

    Hello Mollysol! I haven't been on this site in a long while, but I wanted to see how some of my friends were getting on, and your post caught my eye..... Doctors, for a long while, thought I had MS. I did not. After 3 muscle, and one nerve biopsy, I wound up having some stupidly...
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    Hi crystal....I left a message on my visitor page for you. Sleep tight! Lovelily

    Hi crystal....I left a message on my visitor page for you. Sleep tight! Lovelily
  8. L

    Beth has passed away

    Such sad, sad, heartbreaking news! Beth...may you rest in peace!
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    Another scared person

    Hello gillos....Sorry for your troubles and worries, which are understandable. I agree with Rose on her points. While no one here are doctors, you do pick up some of the medical terminology, that goes along with ALS. I am one of those patients that have confounded the doctors. Go...
  10. L

    Beth?

    Hi Beth...You are in my prayers. Get well soon!
  11. L

    Kidneys are in bad shape

    Hi Joel ~ May God remain with you, and your wife, during this most difficult time! You are in my prayers...
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    visit to neuro for EMG

    Hi Sharon...was the muscle biopsy normal? That ' would ' be a good thing, even though you are not getting your answers. I feel your frustration. If something is there, it will present itself, soon enough. Sleep well!
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    Another EMG

    Very good news, Tom. Have a good day!
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    visit to neuro for EMG

    Hello Good People! I feel bad that you all have gone through so much. :sad: If you get really desperate, there is always the good old muscle biopsy. It can tell so much more than an " EMG ". The best to you all, as you search for your answers!
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    Home with the Lord

    So, so sorry for your lose! May he rest in peace.
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