Recent content by brienw

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    COST OF C9orf72 TEST

    When I went to get my gene test (SOD1 and C9orf72) I first had to get a prescription from my neurologist. I am on Medicare. The testing facility (Athena diagnostics) Did not take Medicare, but did discount the tests. initially around $1600, discounted to around $400. Results: SOD1-negative...
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    Neuralstem stem cell triaals

    It could be very possible that the stem cells were apparently ineffective as I have FALS caused by the C9orf72 gene. In my initial trip to UofM to be considered for this trial I was told they were not accepting FALS patients. A month later they reconsidered and I was subsequently accepted...
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    Rectal Cramps

    I have a similar problem. I get a terrific urge to go that takes all my effort to keep from messing up my pants. this my occur a few times before I can proceed to the pot. It is such a rigmarole to get on the pot ( my wife using a hoist has to lift out of my wheelchair to pull my pants down...
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    Familial ALS?

    My paternal Grandmother died of ALS at age 60 when I was 7 years old. My father started to show signs of dementia at age 65. He died at age 72. The dementia had never showed Alzheimer's type symptoms or progression but none of the family or any of the doctors could tell what kind of dementia...
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    rilutek, pls help..

    early in my diagnosis I saw the 'ABCs of ALS' where I heard that the 2-3 month extension with rilutek was the result of testing PALS with whom the disease was fairly advanced, but if started early, rilutek would extend life a year of more. I started rilutek right away. I must say the disease...
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    U of M Clinic

    I have been to U of M clinic many times. Initially in Nov 2014 I was being considered for the Neualstem stem cell trial. I was examined and questioned by Dr Goutman. When I told Dr. Goutman My grandmother died of ALS and my dad had FTD, he said at that time they were not considering Familial...
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    Neuralstem stem cell triaals

    Another stem cell recipient has posted blog - April's ALS Blog | Doing my best to contribute to the ALS community - describing her experience with the neuralstem trial. She appears to initially had some positive results, but now has progressed. -Brien
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    VA vs. Commercial Medicine Providers

    The VA has done wonders for me. To date they have provided grab bars, a walker, a manual wheelchair, a ramp for egress/ingress, a stairlift, a power wheelchair, a shower bench, a grant for housing and bath modification, a grant for a wheelchair accessible van. a hoist system to transfer me...
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    Neuralstem stem cell triaals

    In January 2014, as part of the neuralstem trial, I received 6,000,000 stem cells injected into the cervical region of my spinal cord. At the time I was walking with a cane with my right leg failing (drop foot and inability to lift my leg). Everything else was OK Now I no longer walk, My right...
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    diagnosed on March 1

    The earliest symptom I detected, was early last summer with my right leg unable to be lifted as high as my left. In approximatly January of this year, I experienced foot drop again on the right. After X-rays and MRI of lower back, I was sent for EMG on Feb 26. With a follow-up with a...
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