Recent content by NanJay

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    MDA verses ALSA Clinic

    Well, this is one venue where we can all empathize with you. I feel sort of the same way-I go to the clinic, spend hours and hours, have a few folks pop in, do the breath volume test, have the neuro basically say, see you in 6 months. Get a handful of brochures about resources, and out the...
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    Medtronic Baclofen Pump

    I have trouble with Baclofen due to the haze and druggy feeling, but if it works for you, they will do a trial with the pump, before you have to commit to getting it implanted. I had an epidural and the pump on a belt, so it was external and could be adjusted. I'm in Atlanta, so our Shepherd...
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    I am on Facebook but I'm hesitant to join a PLS group because of security concerns. I don't...

    I am on Facebook but I'm hesitant to join a PLS group because of security concerns. I don't want my business broadcast to all my friends, and I know there are probably settings to prevent that, I also know that there are flaws that allow others to see your contacts. I've got 4 kids between 20...
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    Hi; I don't get on here very often, but there are a very few of us PLSers evidently. I go to...

    Hi; I don't get on here very often, but there are a very few of us PLSers evidently. I go to Emory also-I actually live a mile or so from there, so at least no traffic. I think I've had symptoms for about 4 years, but went through the gauntlet of diagnosis, including spinal surgery, for years...
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    How do I say it?

    :|I know that most people are so good about offering to hold the door for me, and I now have a folding walker in the back of my car. I might actually go use it today...it is to the point where it is scary to be wavering around with just the cane. These transitions are hard.
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    How do you dose your Baclofen?

    Well, it doesn't take much to make me jump like I've seen a ghost. I guess it's that hyperreflexivity. The ridiculousness of a spider causing a pretty bad fall is not lost on my family, either... One damn thing after another! I am going to give the baclofen another try. Got a bottle of...
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    How do you dose your Baclofen?

    I was prescribed baclofen in 2013, tried it for a few weeks, but the dizziness bothered me. So I quit taking it. My spasticity in my legs, first one then both, was and still is my biggest problem. I tried tizanidine, but still had the side effects. Over the years, I've tried baclofen, and...
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    How do I say it?

    I don't get on and post very often, but I think we can all relate. I was a triathlete, and actually pretty good at it, until the wheels started coming off about 4 or 5 years ago. So of course I was able to handle everything. Kids, house, gardening, schlepping bag after bag of groceries up...
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    New PLS Diagnosis

    I guess 'welcome' is the proper greeting?.. I have PLS, and it took at least 3 years for the diagnosis. Finally, and it seems to be a process of elimination, I got that diagnosis last November. It's 'good', in that it may progress more slowly, or not at all, for many years. But also PLS is...
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    Something about PLS...

    Funny you should mention drumming, AL... my husband played back in high school, but quit during years of college. Then about 17 years ago (when we were about 40), my brother, who sells musical equipment, brought over a nice used drum set. Long story short, he started up again, and even was...
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    Something about PLS...

    It's interesting that the whole foot-tapping thing was really one of the first little warning signs, Mike. I could tap my left foot fast, but the right I could only go slowly. At that point I was also having tons of fasiculations on my legs-right more than left. I'd had them before only after...
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    Something about PLS...

    Yes...a very exclusive invitation list to this party! The Lurch, Twitch and Fall crowd... not too many of us around, according to the statistics.:?:
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    So, I fell

    I started on Riluzole in November '14, my neurologist thought it was worth a try. But with a PLS diagnosis I don't know if there's much data on it. I take one a day rather than two, though. And if it has antidepressant qualities, all the better. Hadn't heard that, but bring it on. It's...
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    Something about PLS...

    This is my first post, first time even looking through this blog. But my journey sounds a lot like yours-I just had a limp, I had hurt my hip waterskiing and thought it was due to that. But four years later, and 3 neurologists, three trips to Mayo Clinic, Rehab MDs, a dozen or more tests...
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