Old 08-09-2007, 04:27 PM #1 (permalink)
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Default Muscle Biopsy Results in ALS

Does anyone know what they show in ALS? What are they looking for?
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Old 08-09-2007, 05:23 PM #2 (permalink)
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Default Pals

also can any of the Pals who had the biopsy done tell us what there results where?
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Old 08-10-2007, 08:38 AM #3 (permalink)
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sorry now one has answered your question yet.

Perhaps Leslie can shed some light for you!
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Old 08-10-2007, 08:41 AM #4 (permalink)
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Hi Lou- great question. Keep thinking and keep researching! Your friend, Cindy
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Old 08-10-2007, 11:05 AM #5 (permalink)
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Lou - if you go to the thread I posted titled "Muscle biopsy yuk- Jamie don't read", there are a couple of posts from pals who told what their biopsies showed. If I remember correctly, though, they mentioned that the muscle showed actual death and denervation. Check it out and see if that thread answers your question.

Did you get the results of yours yet?
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Old 08-10-2007, 11:24 AM #6 (permalink)
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Thanks Annmarie.....it has just been so hard for me lately, that I don't feel like I have too much to offer lately. After being told that my symptoms may be stress/anxiety or just plain not there and then getting a diagnosis.......and now steroids and still progressive symptoms, well, I'm at a loss. It's hard when neuromuscular diseases just have so many variance....even the docs don't know. And, to make matters worse, many of them don't really care. You either present as a typical patient or there is nothing wrong. How do ya work with that?!
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Old 08-10-2007, 01:35 PM #7 (permalink)
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Quote:
Originally Posted by ltr
Thanks Annmarie.....it has just been so hard for me lately, that I don't feel like I have too much to offer lately. After being told that my symptoms may be stress/anxiety or just plain not there and then getting a diagnosis.......and now steroids and still progressive symptoms, well, I'm at a loss. It's hard when neuromuscular diseases just have so many variance....even the docs don't know. And, to make matters worse, many of them don't really care. You either present as a typical patient or there is nothing wrong. How do ya work with that?!
Hi I am sorry you arent getting better with your therapy. However My neuro said It a good sign if they cant come up with a diagnosed. Most likely its too vague to figure out Where as a serious thing persents quickly. I wasnt diagnosed for 5 years so thats how slow my ALS was. It wasnt until I showed atropy in a arm did anyone say it was als and in a way I am glad If I knew 8 years ago it was ALS I may have given up or became a total wreck. I was always happy when I left the md, because they always gave me hope. because I was so wasnt typical . I figure so I have slurred speech I work drive go to the gym babysit dance play I never dwelled on my symptom And best of all I never ever look at this site. Now I depend on it I have become friends and found comfort. To those that do not have Dx make the best of the situation Get life insurance work keep active enjoy your life pre ALS .Until you get a diagnosed its not ALS God Bless Pat
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Old 08-10-2007, 04:10 PM #8 (permalink)
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Pat - that is all true, and I try to think like that. I know you're right about the not getting the diagnosed part. I need to give the steroids at least 4-6 weeks, so I am trying to hold on. The problem is I feel so damn sick. I can't go dance or play with my kids much.........I can't even enjoy eating. Everything has to be done in short intervals and then I have to go rest. The weakness I feel is so uncomfortable. It's more like my jaw (and whole body) is very uncomfortable, cramped and weak at the same time. Maybe it is the lack of stamina that makes me feel so horrible, too. I can't even sit up straight because the muscles in my trunk are so weak. I was to start a clinical research trial for the National Institute of Health, but after the researcher talked to me today he said they would have to wait because he doesn't understand why I have fasciculations. He said he is worried I could have a metabolic myopathy and that my doc should do further testing. That means I have to try to fight to get the doc moving again. It's so tiring.....mentally and physically.
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Old 08-10-2007, 04:28 PM #9 (permalink)
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I feel so bad your so sick I was lucky I only had the slurred speech At the time I was so frustrated ,but now with no use of my arms ,the slurred speech isnt that bad anymore. Now I lost my independence. Which SUCKS!. I hate these Doctor they just dont really liston or care.I am going to see my neuro and demand a Muscle Biopsy, I shouldnt have to beg for something they should have done 8years ago . I pray for all of you Pat
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Old 08-10-2007, 04:51 PM #10 (permalink)
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I know Pat, I tried to not move my arms after you said you were losing them. It was horrible and my heart goes out to you. I think, after 8 years, your biopsy should be definitive. But, I have found lately after talking to so many professionals, that even the muscle biopsies can fool them. Don't be discouraged by that, though, because, like I said, I think after so long yours will be true. It would make me so happy if you had a success story, something that could be done......even just something definitive would help. Thanks for your kind words, they really help.

Lou - we really want to know about your biopsy. Hear anything yet?
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Old 08-10-2007, 05:04 PM #11 (permalink)
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Default ltr, annemarie, patrica1

I have some of the same symptoms. I am uncomfortable and hurting all the time, my fine motor coordination in gone, and I have lots of pain. My jaw hurts so much in the morning- even with a night guard.
My theory is that we are very much in tune with our bodies, so we have noticed and recognized a problem in ourselves before modern medicine can give us a definitive test and prove us correct. The saying goes 'hindsight is 20/20."
I have known for three years that something was wrong. Before and after the last three doctor visits, I have cried my eyes out. But I will continue to struggle with the doctors.
I am trying to live as best I can.
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