Recent content by gjbuddy

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    Dreading upcoming ALS clinic visit

    Hi Mark, I know what you mean. I have my 3rd clinic visit tomorrow. I told my husband this weekend, if I didn't get in a clinical trial or something, I'm not going back. I have a good doctor but really not much he can do except check me. I get stressed thinking about it but .... I guess we have...
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    Riluzole probems?

    Riluzole probems? I could not take it. I'm still working and per my doc, took one in the morning and one in the evening. Within 30 minutes of taking the morning pill I could hardly walk. My balance is bad already, but I still work part time, drive, etc. I felt that I could not drive or work...
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    drugs and side effects

    I probably won't be working much longer so maybe I'll give the Riluzole another try when I don't have to drive. Can you tell whether or not it's doing anything for you? Thanks for the info.
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    drugs and side effects

    I wanted to find out if others have had side effects from Riluzole and Neurontin. I was on both and now off both. I went off one at a time to try and figure out where the side effects were coming from. When I took the Riluzole in the morning, within 30 minutes, I could hardly walk. I was numb...
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    Worried about housing

    I was diagnosed in July and my legs are the issue right now. I still walk but the stairs are not easy. We live in a two story house. We thought about moving the bedroom to the dining room but we only have a very small half bath on that level. We just purchased a ranch condo and close in 2 weeks...
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    Help from MDA

    On my first visit to the ALS/MDA clinic at OSU, I met with a rep from MDA. They will cover anything at the clinic that my insurance does not, they loan equipment, arrange for home help, help with disability paperwork, etc. Along with the ALS Center Ohio Chapter I feel that I will have lots of...
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    sleep medications

    Hello, I have a terrible time sleeping. If I wake up at 2am I can't go back to sleep. When this happens my muscles ache more than normal and I actually feel sick. I am still working (as much as possible) and it's hard to do with out sleep. My doctor put me on Trazadone for sleep. I've been...
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    Coconut oil

    I don't do the DP either, but I do take COQ10, AKG and use the coconut oil. What better drugs are out there? I don't know of any. Please share. Thanks. GJ
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    Coconut oil

    Hi, My husband massages my legs with coconut oil every day and my entire body a couple times a week. My ALS started with my left leg and has moved to my right a little. I was diagnosed in July, 2013. I've read it's good for the muscles. It's part of the Deanna Protocol, but if nothing else, it...
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    ALS Diagnosis Confirmed Today

    Thanks for the info. It's only my husband and myself, no kids to help with a move. My only sister is out of state. I know my husband is facing some big challenges in the future. We both still work. I'm 58 and he is 60. Retirement isn't in his future for a few more years. Our house is paid for so...
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    ALS Diagnosis Confirmed Today

    Hello all, I had my clinic visit today at Ohio State Wexner Medical Center. I've had 6 MRIs, 2 EMGs and lots of blood work with two different neurologists.... all fairly normal. So today my diagnosis was confirmed. Its ALS. My husband and I were prepared for the news. We had the same diagnosis...
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    Newly "almost" diagnosed

    Hello Tracy, I read about the Coconut oil in the Deanna Protocol. We have been using it every day for about a month. My husband massages my legs every night. Currently only my legs are weak. Every other night he includes my arms and shoulders. I don't know that it works but it sure feels good...
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    Newly "almost" diagnosed

    I use a cane when I know I will be walking more than usual. I really try to limit my steps. I see the dr. again on Oct. 8. I had boat loads of blood work last week, two more MRIs next week and then another EMG. That should give the doc an answer. Maybe not the one we are looking for but at least...
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    New diagnosed 7/18/2013

    I was also diagnosed on 7/18/13 in Columbus, OH. Although now my new doctor says it is not 100% but I think he is just doing all the tests to rule out anything else before he confirms the first docs diagnosis. One day at a time!
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    Newly "almost" diagnosed

    Hello all, I've been reading the posts on this forum for over a month now and decided to join in. I was diagnosed by a neurologist on July 17 but went for a second opinion with a really good doctor at Ohio State Medical Center - Dr. Kissel - and he said it's possible but is doing more tests...