father

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    Is Lyme a scam?

    Hello everyone, We live in a zone where cases of Lyme are frequent. Recently, some people of my town diagnosed with MS / Parkinson's were treated with antibiotics for Lyme and improved. One of them suggested my father see a physician with expertise on infectious diseases. I was extremely...
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    CACNB4 mutation

    Hello everyone. I come back with an update about genetic test. They found CACNB4 gene mutations on my father with CACNB4 variants: NM_001330115,: exon6,: c.G518A,: p.R173Q, Chr2. That's a autosome dominant and I'm 75% able to carry a mutant. I'm currently waiting for my own genetic test results...
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    Arimoclomol

    Hello, My father is considering applying for the Arimoclomol Phase III study in Madrid. Since we are new to this, I had some questions: 1) How promising has Arimoclomol been? Browsing, I was surprised to find that an earlier trial was done 10 years ago (!). Is that timing normal? Why so long...
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    ALS fear with thenar atrophy, twitching, cramp tendency

    Hi there Great respect to your forum and the great people that are fighting the disease, friends and care givers! ALS is a shocking tragedy for humanity in 2019, 150 years after its discovery still no cure. About myself I'm Asian, live in Calgary, Canada. I'm 33, a father of 2 lovely kids at...
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    Not sure if I should be worried or not...

    Hello all. I’ll start off by saying Happy New Year and I hope everyone has a joyful evening. I’m a new member to this forum but I’ve been reading post after post as a guest. I’m a 21 year old female who has been having worrisome (to me) symptoms. I’ll admit to everyone I am somewhat of a...
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    Vertigoo / Dizziness

    Hello everyone, Lately, my father has been having short episodes of dizziness and vertigo. He literally says that his head "goes away." Today he was shaving, standing alone, in front of the mirror, and almost fell because he got dizzy. The weird thing is that he can walk for a mile with a cane...
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    Doing chores

    Hello, and Merry Christmas! I am writing to ask you a question about the daily chores. My father has retired about a year ago and has been suffering from PLS for 3 years. Since then, he spends most mornings doing chores: aside from showering himself and getting dressed, he cooks for the family...
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    Weight gain

    Hello beautiful souls, Since symptoms began, my father has been steadily gaining weight, especially over the last few months as spasticity worsened. He tries to stay active by going to physical therapy three times a week and by pedaling at home in the electric bike, but he has gained at least...
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    Help understanding new medical report

    Hello, I am writing to you to ask for help understanding the last report from my father's neurologist. He is 60 year-old men who was previously diagnosed with PLS (three years of symptoms). I am interested in knowing if the new report suggests to you that the diagnosis might change to ALS. I...
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    Resources for relatives living abroad

    Hello, I was not sure whether to make a new post or to post on a previous one on teens, but I think that living away changes the experience quite a lot so I figured it would be helpful to open a new thread. As some of you know, my father was diagnosed with PLS. I am from Spain, where he still...
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