Recent content by Bulldog29

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    Need advice-pALS with new baby

    Hi everyone, need some advice/suggestions from the group. A little history, I first noticed symptoms in 2013 and after 3 years of doctors, tests and surgeries I was diagnosed Dec 2017 with UMN predominate ALS. We then found out in February of this year that we were expecting our 3rd child...
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    Bad news before Christmas

    Deb-wow, it is a small world! What doctor/s does your husband see? I know UTSW is the best site locally but just wondering if you guys have travelled for anything. I guess I never allowed myself to ever consider the "worst-case" scenario and have done very little research on ALS and what...
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    Bad news before Christmas

    Well, it looks like I'll be migrating over to the pALS forums. Went for my second EMG earlier this month (first one was in February 2016), Dr Elliott told us that they saw progression to the point of being fairly certain it's not PLS and is ALS. We talked to a social worker at UTSW and the MDA...
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    Updates and question about stride progression

    You know, it hasn't and I'm starting to think that there is some correlation between surgery and MND symptoms. This is just my observation but it seems that a large number of folks with diagnosed MND started off having some kind of surgery that, ultimately exacerbated their symptoms. Even though...
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    Clonus...

    Not sure I'm following the last part; it's my understanding that muscle cramps, spasms and Charlie horses are all the same thing and are muscular. Fasciculation's are involuntary muscle twitches as is clonus. Fibrillations are involuntary muscle movements caused by loss of connectivity to the...
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    Clonus...

    Al, I went to Youtube to check out the video but pulled up dozens of them. I'm confused about clonus and if what I'm experiencing falls under that heading. Does clonus only occur from a physical trigger (ie reflex strike)? When my doc checks my reflexes I violently kick but have very little...
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    Updates and question about stride progression

    Haha, I hear you. I was a hockey player (goalie), it was my job to fall down a lot. I was very self-conscious at first, I searched and searched for a cane that didn't look like I bought it at the corner drugstore. The one I found in Honduras is beautiful, hand-carved but understated-I get lot's...
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    Updates and question about stride progression

    In my case, I went from occasional little trips (not falling, just catching my toe) about 3 years ago to more of a shuffle like you mentioned about 2 years ago. Over that time, my balance has gotten worse, and the falls more substantial. I currently only have the issue on my left side as the...
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    Finding a neurologist who knows...

    I also go to Dr Elliott at UTSW in Dallas. Had a diagnosis of PLS from first neuro in 2014 and went to clinic at UTSW for second opinion.
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    401k & ira

    One quick correction to some of the above advice. You can not take a "loan" from an IRA, that's only a function of a 401k. You do pay yourself back but if you're forced to stop working and can't make the loan payments, it becomes a "taxable event" and is taxable in that year as income. The...
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    (sorry, last msg went over character max)-I can definitely tell that my condition has worsened...

    (sorry, last msg went over character max)-I can definitely tell that my condition has worsened but not sure to what degree since my daily routine has changed so drastically since the first of the year. Anyway, keep in touch, good to talk to someone who can understand what I'm feeling. - Clint
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    Hi Stan, sorry to just be getting back to you, I don't come around here very often because after...

    Hi Stan, sorry to just be getting back to you, I don't come around here very often because after reading a few posts I just get depressed. There's also a few folks here that are just down right mean. It does sound like we're in the same boat, I'm headed back to the MS/MND clinic at UTSW in...
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    Clinic Update

    Not to hijack this thread again but just wondering what everyone's experience has been in regard to milestone changes. For example, what was your experience and timing when going from slight limp to cane/walker or from being mostly functional to being a constant fall hazard? I feel like I have...
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    Any experience with keppra?

    During my visit last week with neuro at UTSW, I told him about my issues with the baclofen. He switched me to a new med called keppra. So far I like it but it makes me super sleepy. Any one have any experience with this one?
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    How do you dose your Baclofen?

    I'm not sure how to drop a link to the thread in this response but it's only a couple down from this thread titled "Update after UTSW visit". I think I now can understand Al's consternation when new members get a diagnosis at what must seem like warp speed compared to his own experiences and...
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