Recent content by Eydie67

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    Just finished second opinion appointment

    Your so sweet, the waiting is the worst part of it, I pray you have a diagnosis soon. I lost my son to pneumonia just a few weeks before I got my diagnosis, it kind of put things into perspective for me.
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    Just finished second opinion appointment

    I have had PLS for 12 years, diagnosed seven years ago. Texas Neurology, Dallas Tx. Dr. Heitzman I've had numerous EMGs, Blood work, and so many test, 4 doctors and 2 1/2 years later I knew what I was dealing with finally. It has been slowly progressing, very slowly. Thank God My balance...
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    PLS I'm on a new drug for me that seems to be working.

    I started at a fairly high dose 3 pills a day, it worked almost immediately. I did experience some nausea at first but if I eat a cracker I'm fine.
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    PLS I'm on a new drug for me that seems to be working.

    My Doctor at TX Neurology suggested I try a drug called Carbidopa-Levodopa25-100 tabs. This drug is used for Parkinson's but they have found it's working on PLS. I've taken Bacoflin for years. It's not always effective for me, but the Carbidopa has almost completely stopped the spasms in my...
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    PLS Study Columbia Univ Dr. Massac

    I'm not great at posting Links. I'll give you my connection Columbia University Medical Center Department of Neurology Clinical Research Center my contact is Johnathan Huff 212 305 2508
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    PLS Study Columbia Univ Dr. Massac

    Well in August I was asked to be in a study for PLS. I was diagnosed 4 years ago. Their are 3 people from TX. Neurology in Dallas that are part of the study. Columbia Univ. is heading up the study. There are participants all over the USA , they are trying, at this point to get base line...
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    Finding a neurologist who knows...

    Rubato Your are a neighbor of mine. I lived in Flower Mound and now live in Lewisville TX. You mentioned the ALS/MDA clinic, is this at Texas neurology or SW Medical? I went to 3 other neurologists before I could get a diagnosis. It took me like 4 years of doctors looking at me and...
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    Vehicle advice

    I also use a rollator for limited walking, and when I go out I use a GoGo Scooter. We recently purchased a Mazda CX5 and had a lift put in the hatchback it fits perfectly. I can just slide in this SUV without a stepstool. I'm 5'4" if that helps, I tried a bunch of SUV's before I found one...
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    PLS study

    I have also emailed Paul and no response. Eydie
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    A couple of questions about how to manage with PLS

    Hi Chris, I happen to remember the first incident because it was the day my grandson was born in Georgia 5/5/99. My husband and I were driving from Texas to Ga. and I started experiencing spasm's in my left leg. I thought it was cramps or a Charlie horse I just didn't have a name to put with...
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    A couple of questions about how to manage with PLS

    Hi Janelle, thank you for your support. I think the speech problem is the worst. I struggle with certain consonants and lots of syllables it's so frustrating. take care and I do think I will become a active participant. Eydie
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    A couple of questions about how to manage with PLS

    Hi All, I have PLS and I'm 69 yrs. old, this illness really sucks. I'm not sure when it first started but I think 16 yrs. ago. It has progressed very slowly thank God it gives me time to adjust as each new thing as it arrives. My speech is getting worse as the months go on, but I try and my...
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