Recent content by RandomMom

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    Clinical Trials

    Hi Kevin – I’m in the Healey Platform trial – regimen d which is pridopidine. I will know in 4 weeks if I am getting the drug or placebo. We think I may be getting the drug as I experience dizzy spells now when I stand up – a known side effect. I’ll continue in the open label part of the study...
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    Slow Progression Questions

    I am a slow progressor as well. Similar symptoms to you but I am fortunate to be left handed so I can still do most things OK. Fatigue is a big problem for me and I have pretty bad neuropathy in both my hands and feet. While I am going a little stir crazy at home, it has helped me work-wise...
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    casual morbid thoughts

    I have been thinking my own morbid thoughts as related to the coronavirus. I’m the lead administrator at my University in coordinating our response to it. We have moved our courses online or the next couple of weeks and some staff will be working remotely, including those with chronic health...
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    Technology to help

    Thanks so much! This is so helpful (not that I understand all of it, but am lucky to have people in my life that do!) Really appreciate you putting it together.
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    Precision Medicine Program?

    I participate in the study and have been since March. I visited the lab and was very impressed by everyone's dedication and commitment. I like feeling like I am part of the solution, even in a small way. I am progressing slowly, so the trackers and speech recordings are not really telling me...
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    Diagnosis confirmed

    Hi everyone – I have been reading the forums daily for a while now, have learned a lot, and feel like I know all of you well and wanted to let you know a little bit more about me. I posted in the “Could this be ALS” forum a few months back and took the very good advice that I received thee to...
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    Newly diagnosed with MND/probably ALS but have questions

    Hi Laurie - This has all happened very quickly. I saw the first neurologist in December at my local hospital in South Jersey as part of a referral for carpal tunnel syndrome from a hand surgeon. She immediately transferred me to Jefferson. After the fact, she said she suspected ALS but...
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    Newly diagnosed with MND/probably ALS but have questions

    Hi there – I am a 53 year old female and was recently diagnosed with MND, probably ALS, after two abnormal EMG’s in December. I have had blood work for the usual things (all negative) and MRI’s for the spine and brain (also negative). My only presenting functional issue is weakness in my...
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