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Thread: Just diagnoised with Guillian Barre Syndrome

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  1. #1
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    Default Just diagnoised with Guillian Barre Syndrome

    Anybody out there dealing with this? Id love to talk with someone that can give me some been there done that advice.

  2. #2
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    I'm sorry to hear about your illness. I have MS (diagnosed in 1989) and suffer the same type of symptoms. Are there support groups near you? Possibly your dr/clinic can help you find something.

  3. #3
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    Quote Originally Posted by A Simple Pine Box View Post
    I'm sorry to hear about your illness. I have MS (diagnosed in 1989) and suffer the same type of symptoms. Are there support groups near you? Possibly your dr/clinic can help you find something.

    My Father fought MS symptoms for years. He took B-12 shots,
    his legs would buckle from underneath him sometimes, and he ended
    up using a cane, but he didn't end up in a wheel chair. He was a
    fighter and I think that was half of the battle. I am going back to the
    neurologist, because the last MRI they did on my brain, back a few
    years ago, there were dark spots, and when I read the report it kept
    mentioning "demyelination"...........

    A degenerative process that erodes away the myelin sheath that normally protects
    nerve fibers. Demyelination exposes these fibers and appears to cause problems in
    nerve impulse conduction
    that may affect many physical systems. Demyelinization is seen in a number of diseases,
    articularly multiple sclerosis.
    Diagnosis is by functional observation and by testing for myelin protein in the blood.

    Dad always wanted me to go be tested for MS, as he said that I
    have quite a few of the same symptoms as he did.....he passed away,
    and I had never gone for tests. The neurologist wants me to come
    back for further testing. I seem to be the kid (out of four of us) who
    has the same diseases/ailments as both of my parents, including
    otosclerosis.

    A Simple Pine Box, I'm sorry that you suffer from MS. What are you
    taking/doing for it? It does affet different people in various ways, with
    some becoming disabled quickly, while not affecting others as fast.

  4. #4
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    There's a thread about this and fibromyalgia over on the herbal list and the general consensus is to add magnesium rich foods to your diet, and have your doc test you to see if you have a magnesium deficency.

    K-
    • “I am not afraid, because I was born to do this."

      Joan of Arc
    Mark 8:38 - Whosoever therefore shall be ashamed of me and of my words in this adulterous and sinful generation; of him also shall the Son of man be ashamed, when he cometh in the glory of his Father with the holy angels.

  5. #5
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    Quote Originally Posted by packyderms_wife View Post
    There's a thread about this and fibromyalgia over on the herbal list and the general consensus is to add magnesium rich foods to your diet, and have your doc test you to see if you have a magnesium deficency.

    K-

    Wow, I have fibromyalgia and cfr, and never heard about this......thank
    you, Packy. Not sure who you were addressing this to...maybe to
    anyone who would benefit from it, but it's greatly appreciated. =)
    Can you point me in the direction of the herbal list, here? TIA.

  6. #6
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    You are going to need to do a lot of research and take what you read with a grain of salt.
    Neurologic wasting diseases are hard to diagnose and we still don't fully understand the
    process. There are a lot of factors involved but diet and exposure are likely factors and changes in diet may help.
    Pleasing your enemies does not turn them into friends.


    --------------------------------------------------------------------------------

  7. #7
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    Does anyone know of any empirical evidence showing flu shots can still cause GBS? I found the documentation on the 1976 Swine Flu shot causing some number of cases, but nothing current except denials. My son in law, (42 - strong as an ox), just got hit with it this week, and had the shots due his profession. He felt lousy for a couple of days, then stumbled going upstairs, puked his guts out, nearly collapsed, and went to ER. He's in ICU on oxygen, as it has affected his heart and lungs. They're doing the immunoglobulin infusions, but he's in bad shape. Worst part is he doesn't know the LORD. What I read says if he pulls out to 80% or better within three weeks it can be in remission indefinitely, but no one seems to have a handle on causation, positive cure, or alternative recovery/ therapy. If/when he pulls out, he is headed for a rehab center.

    Anything you have learned in the interim is appreciated, nikki, and my prayers are with you. Flat scary stuff.

    Tras
    "They who have put out the people's eyes reproach them of their blindness."
    John Milton, 1642

  8. #8
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    Quote Originally Posted by Pinky View Post
    I am going back to the
    neurologist, because the last MRI they did on my brain, back a few
    years ago, there were dark spots, and when I read the report it kept
    mentioning "demyelination"...........


    A Simple Pine Box, I'm sorry that you suffer from MS. What are you
    taking/doing for it? It does affet different people in various ways, with
    some becoming disabled quickly, while not affecting others as fast.

    I would suggest that you do go back to the dr - at the very least you would have a name for the symptoms you are suffering. About 10 yrs ago I took the shots that were available for MS. I took Rebif for around a year (among other problems, it gave me the worst migraines I've ever had) and then I took Copaxone for 2 years (also gave me headaches among other symptoms). I have been off the drugs now and DO NOT EVER plan to take the drugs again.

    It's been 23 years since I was diagnosed. It has only been in the last few years that I've been really struggling with MS. I'm using walking aids now and we bought an electric scooter last year. What an energy saver that is! I can actually go shopping with my family and keep up with them!

  9. #9
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    Sep 2008
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    Iowa
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    Quote Originally Posted by A Simple Pine Box View Post
    I would suggest that you do go back to the dr - at the very least you would have a name for the symptoms you are suffering. About 10 yrs ago I took the shots that were available for MS. I took Rebif for around a year (among other problems, it gave me the worst migraines I've ever had) and then I took Copaxone for 2 years (also gave me headaches among other symptoms). I have been off the drugs now and DO NOT EVER plan to take the drugs again.

    It's been 23 years since I was diagnosed. It has only been in the last few years that I've been really struggling with MS. I'm using walking aids now and we bought an electric scooter last year. What an energy saver that is! I can actually go shopping with my family and keep up with them!
    Have you been following Montel Williams progress with MS? He's been doing a lot of alternatives and has been seeing great results.

    K-
    • “I am not afraid, because I was born to do this."

      Joan of Arc
    Mark 8:38 - Whosoever therefore shall be ashamed of me and of my words in this adulterous and sinful generation; of him also shall the Son of man be ashamed, when he cometh in the glory of his Father with the holy angels.

  10. #10
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    Thank you for all the input. I checked out the links that were posted. I had already seen the last 2 but the first 2 were new to me. I have been hunting for the herbal list that was mentioned but havnt found it yet. If someone could post a link that would help.

    I have never had to search for a doctor before...how would I even begin the search?? I dont know where to start.

    I am really trying hard to keep positive. But it is so hard. I am used to being able to do it all...and now it is all I can do just to get up each day. i just want this to go away...but I know I am stuck with it for now...The only thing that keeps me going is knowing that others have been through it and came out of it almost normal.

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