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  • motor neuron disease

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    Old 04-27-2007, 07:18 PM   #1
    Michelle71
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    Unhappy motor neuron disease

    Hi, my name is Michelle. I am 35 yrs old and was originally diagnosed a few months ago with polymiositis. I've been on Prednisone (which didn't really do anything and IVIG treatments which didn't work either ( but I did end up with chemical menengitis). My Neurologist sent me to his mentor at the Cleveland Clinic in Ohio ( just got back yesterday) and they feel I have a motor neuron disease of some type. I currently can't walk and my arms and hands are weak, my legs get really cold sometimes, sometimes they fell real restless which is aggravating being I can't move them, I don't have pain, just cramps when they are in one position for a long time. Anyway, I took my 4th EMG this week of which hurt this time and now I am very sore. There are no specifics yet and the doctor told me there will be more tests I need to take here with my doctor, which is ok, they seem very detailed in their research. I am basically starting all over again. He did say that motor neuron could be a wide variety of things, but when I look it up I mainly get stuff on ALS (which honestly scares the hell out of me, I have two children and a single mom) What other diseases can be diagnosed? and has anyone gotten strong enough to walk again? He also said from my lumbar punctures I had low counts of white blood cells, and he'll want to do another to see if its down to zero. Confused, scared, frustrated. Would love some feedback.

     
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    Old 05-02-2007, 05:37 AM   #2
    Sunshine008
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    Re: motor neuron disease

    Hi Michelle,

    I don't have any insightful information for you, but wanted to jump on to say I'm thinking of you and will keep you in my prayers. I'm sure you must be really scared. I'm gald you have good docs on the case, which means they'll do everything possible to help you regain muscle use, or atleast stop the progress. Hang in there. There are lot's of us on this board who silently read and don't post much. But, we're with you in spirit and cheering you on for a better diagnosis and recovery.

    I'm undiagnosed as of yet with 2 abnormal EMG's and biopsies scheduled for next week. It's a mild, chronic progressive muscle disease - motor neuron in nature. I also have involvement of my autonomic system and joints. What fun. I'm a 44 yr old mom with a 3 yr old.

    I'll be watching for good news from you...

    Sunshine

    Last edited by Sunshine008; 05-02-2007 at 05:40 AM.

     
    Old 05-03-2007, 11:07 AM   #3
    Michelle71
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    Re: motor neuron disease

    thank you for your prayers. good luck on the biopsies. I'm hoping to get some info soon. I'll be praying for you also.

    Michelle

     
    Old 05-04-2007, 07:02 PM   #4
    savers03
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    Post Re: motor neuron disease


    Hello. I just read the 2 previous messages and am feeling a kinship here. I am brand new into the frustrating discovery process of the new game show 'Whats My Disease?' Contestants must pass several bothersome, expensive, annoying and sometimes painful medical tests. Ugh. Not loving it. I have entire body and muscle aches/pains, & joint pain - what fun! {not} both muscle and body aches/pains. I already know both knees and ankles are severely injured with the first surgery to begin in about 2 1/2 months. Then along comes sciatica in both hips and knees! WooWee... or BooHoo!?! OW OW OW. I have elected - unvoluntarily I assure you - to also take on foot dropsy. I day ago I lost all feeling in my foot and was unable to walk. My doc got me into the hospital ASAP for the MRI and am waiting till next week to hear the results. Also he says the next step is a Neurologist. Swell................ Now how long will this go on? <sigh>

    savers

     
    Old 05-06-2007, 08:43 PM   #5
    Sunshine008
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    Re: motor neuron disease

    Savers -

    Sorry to hear you've joined this circus act. You are in good company here. I think we should move this discussion to the neuromusclular diseases board since ALS has been ruled out (at least in my case). I was just here to give support to Michelle. See you over there.

    Sunshine

    Last edited by Sunshine008; 05-06-2007 at 08:47 PM.

     
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