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Thread: I need some medical input Wise...medical folks please!!

  1. #1

    I need some medical input Wise...medical folks please!!

    GETTING REALLY SCARED!!! My body is getting weaker everyday. I've been paralyzed for 6yrs. by MS. It worked its way up my legs, first it took my hip flexors.

    Then the numbness traveled up both legs taking away the ability to move them but I could still feel touch on them.

    Then it swept up my legs causing a more dense numbess this past summer. This past week it swept up both legs again so they feel more dead. My arms and hands have become weaker. Its hard to feed myself. In bed...I wake up several times needing to move but from the waist down my body is too heavy and feels dead and my arms don't have the strength to lift up out of my covers to pull myself over using the rails on each side. Even though I keep working on my upper body strength and my overall body weight is 160lbs and I'm 5' 8" tall.

    Is this "End Stage MS? No one knows if theres any going back from here. And lastnight my Dr. office called to tell me I have Osteoporosis and am being referred to a Rhumatologist. My eyes are getting blurry from tears gotta go.
    "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

  2. #2
    Senior Member
    Join Date
    Sep 2007
    Fithian, IL
    Oh Snuz ((((hugs))))

    What all meds are you currently taking? Did you tell your Dr. things are getting worse? Did he have any recommendations?

    Think positive, stress plays havic on your body too.

    I'm praying for you,

  3. #3
    Snuz, I wouldn't worry about the osteoporosis at this point. A second - or even a third - neurological opinion might make a big difference. I also wonder if a round of Solu-Medrol in the hospital could halt (or slow) the rapid progress of the inflammation.

  4. #4
    Quote Originally Posted by Snuz View Post
    My eyes are getting blurry from tears.

    Mine are too.... So sorry, sweetie.

    I'll be thinking about you(((hugggsss))))

  5. #5
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    I'm with Bonnette. I wouldn't worry about osteo right now ... people with mobility challenges all have those issues to a certain degree. The only concern you need have with that is that you don't try anything crazy so you don't fall and break anything!

    If I'm not mistaken, stress can exacerbate your symptoms .. it's also the time of year when we take stock on our lives (I'm going through this right now too; admittedly, am depressed) ... worry about one day at a time. I know it's easy for me to say ..
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  6. #6
    Senior Member fishin'guy's Avatar
    Join Date
    Jun 2008
    Seattle area Wash state
    Get to the rheumatologist, they can be miracle workers, just have to put up with anti-inflam. some drugs you may have to put up with them for awhile, but go with the program, hope they do you some good, god be with you, just work on the upper body, and relax, your in my prayers.

  7. #7
    Hi Snuz, just giving this thread a bump and hoping there will be a way to stop the progression...I understand your terror and tears and wish I had something more to offer than words!

  8. #8
    Thanks everyone! I feel better today. Would still like more info about my paralysis and also how stem cells would repair the MS spinal cord where old lesions have caused disability. Do the lesions become scar tissue? How could stem cells help anything like in the cervical or thoracic spine where there is alot of old lesions. I guess I am always looking for help and answers about my condition since everyone with MS is different.

    I am now requesting a stander/glider...think it would be better for my MS and Osteo. My PT is trying to atleast get a stander but time is running out. My Medicare Advantage plan is going to be cancelled so I have to switch to something else by December 30th!! I don't know which new insurance to pick. ANYONE ELSE HAVE TO DO THIS?

    I hope you all are doing well!!!!!!!!!!!
    "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

  9. #9
    So glad to hear that you're feeling better. The stander sounds like a great idea. I haven't dealt with Medicare, but I know a couple of people who are going through that changeover dilemma and I hope your PT will be able to get you what you need before the 30th.

    That's such a good question about stem cells and what they could actually do in terms of existing lesions. I think of the lesions as "dead zones" and wonder what impact (if any) stem cells could have on them.

  10. #10
    Hi Snuz, just giving this thread another bump. I think that all of us with non-traumatic SCI can relate to your questions, and the urgency that builds with steady loss of function. Hope we can learn something about possible ways to slow that process.

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