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Thread: Niece diagnosed with TM

  1. #1

    Niece diagnosed with TM

    My name is David and my niece has been diagnosed over the weekend with TM. She was at a waterpark in WI Dells and after coming down the slide got stomach pains, back pains, and then lost leg function in a matter of minutes to maybe an hour or two. They took her to the emergency room and were told it was likely a bruised spin and to go back to the hotel and wait it out. It was the next evening that I got a call from my mother and I immediately called my sister and told her to take her daughter to the closest major hospital... Madison, WI. She was then diagnosed with the TM on Sunday (yesterday - day 3). I am trying to do all the reading I can and found this site. I am on pins and needles.

    My sister is telling us that her daughter has full bladder function and has feeling everywhere in her body. The only effected parts are the legs and feet where the feeling is numb and tingles. The worst if got was total loss of right leg control/movement and most of the left leg (could maybe pick up leg a couple inches when laying down). They did full body MRI, Cat Scans, and ex-rays. Nothing has shown up and they did a spinal tap and nothing has shown up either. They are calling it TM until they find something else with additional tests being done and waiting for results.

    They put her on steroids last night (Sunday - day 3) and this morning she was able to lift her left leg straight up in the air but has limited control. they also did the strength test and got a 3-4/5 on the left and 2/5 on the right... not sure what that means. The right leg she was able to lift up 18 inches. The were able to put her in a walker, with two people supporting her weight, and she was able to move her legs (very difficult and slow and I think hyper-extended her right knee a little so are going to use a brace tomorrow) but carried little to no weight.

    She is 13 years old and was completely healthy, very good athlete. What confuses me is that everything I have read has not been welcoming, but the neuro doctors are telling them they expect a full recovery in a matter of 2 months with some chance that very minor effects may be permanent, but so small that it's not likely an untrained eye will notice. This appears to be very optimistic based on the information I am reading.

    I have not passed on any of the information I have found as I don't want to second guess the doctors or cause undue stress as they are already bummed out. More the latter.

    However, I wonder if my silence of the matter could cause further harm / lack of needed special treatment. Not sure whether I should tell the "bad news" I am reading or just let them continue as it appears at least the doctors are aware and are treating the TM diagnosis.

    Also, any idea of good / bad due to the quick onset. I have read this is bad. Also, she has lost no bladder control and has shown improvement in the first 12 hours after her first steroid with movement in both legs and feeling (although numb) in the legs and feet where the problems are apparent. My hope is the initial impact was minor and thus recovery is more likely... is this hopeful thinking? Does the doctors recovering prediction seem right?

    Overall, their spirits are good as they are telling me the doctors are saying all will be basically back to normal in a couple months, although a lot of hard work to get there. But I am sitting her reading on the internet and freaking out.

    Also, I don't mean to be insensitive to anyone on this board, I simply care about my niece deeply and hate to think this is happening. What a terrible condition... this just sounds terrible. Something I wished I never heard of! My family also just went though losing my father to a GBM Level 4 brain tumor about a year ago that we are still trying to come to terms with every day. That was the worst thing so far in my life and now another 1/million bad thing. My father in-law, not my sisters, also died from a GBM in 2000... the odds are unreal. My sister is on anti-depressants and thus another reason I don't know whether it is good to say something or not. I guess it's a balance between good spirits and potential reality. I'm wondering if further stress may hinder the recovery as my sister will be instrumental in the treatment and needs to be sign of strength and hope for my niece. Unless the doctors are right in that full recovery in her situation is likely and they are already doing the right things in physical therapy and steroids.

    Any guidance or words of wisdom from anyone that has experience or long term knowledge would be helpful as my understanding is a day on the internet and over the telephone with my sister who is passing on second hand information from her daughter's doctors.

    I really need to determine whether I bring about this information or keep to myself over the next couple days / weeks. Does the short term options matter whether I expose what I have learned on the 1/3 good outcome, 1/3 fair, 1/3 bad. I haven't read anything that says if you have it and do this in the first week then it improves odds significantly. So I am not sure again whether the extra stress is worse then passing on internet information to my sister.

    I am tired, so I apologize about any spelling errors, run-ons, or repeat thoughts... Thanks,... also best wishes to everyone... I don't know first hand the effects but did experience my father and father in-law in battling GBMs and now this... so I have a small feeling on what you are going through. Good luck and again thanks,

    Dave Gaede
    563-249-4506 (cell)

  2. #2
    Is anyone talking about IVIG treatment and/or plasmapharesis? TM is an autoimmune disease, and these treatments should be considered.

    The leading center in the country for TM research and treatment is at Johns Hopkins. Any way you can get her moved there?

    I hope you have this website already:

    Welcome to CareCure. Please feel free to ask any questions. We will try to help you find the answers.


  3. #3
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    I was diagnosed with TM at age 12, 23 years ago this summer.

    It sounds like your neice is in a much, much better situation than I was! I was left permanently paralyzed from the belly button down. Keep her moving. TM is very fatigueing though ... I remember not being able to hold my head up even.

    There's always a period of 'shock' (for lack of a better word) but she'll probably improve within a week or two. I'd definately follow up on the nurse's suggestion of contacting a Dr Kerr at Johns Hopkins. It's such a mystery syndrome that I don't think I'd start a panic within the family ... just take it one day at a time ... but definately try to get those doctors in contact with Johns Hopkins.
    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

  4. #4
    Senior Member dizzal's Avatar
    Join Date
    May 2008
    Milwaukee, WI
    You will find this site to be very helpful and supportive i have keep coming back and my prayers are with you and your family.

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