My 13 year old has lost her ability to lift her legs...

Posted by sph6518 @sph6518, Jan 8, 2012

In mid-September my daughter had severe constipation which led to abd pain. After numerous tests and dr visits with no diagnosis, she had her gall bladder removed. The abd pain is gone. At some point she began losing her ability to lift her legs, but I don't know whether it was prior to or after her surgery. Certainly since her surgery, she has only be able to "shuffle". She has continued to decline and is now at the point, where she litterally cannot lift her feet or legs off the ground. She has had MRI of spine and brain looking for Transverse Myelitis but nothing was found. Our ped is referring us to Mayo because neuro in our area has told us "nothing is wrong with her". My daughter cannot stand up on her own, walk, or go to school. Something IS wrong. Has anyone had similar experience?

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I'm sorry, I don't have any answers for you but I want to tell you that you are in my prayers. Keep pushing these Doctors and being a strong advocate for your daughter. You are doing just that! Even though your local Doctors are telling you nothing is wrong, you know something is wrong. God bless you and I hope that you find out really soon what is happening. Run don't walk to Mayo and find out what's happening.

Best of luck,

Laurie

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@madsel

I'm sorry, I don't have any answers for you but I want to tell you that you are in my prayers. Keep pushing these Doctors and being a strong advocate for your daughter. You are doing just that! Even though your local Doctors are telling you nothing is wrong, you know something is wrong. God bless you and I hope that you find out really soon what is happening. Run don't walk to Mayo and find out what's happening.

Best of luck,

Laurie

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It does sound like Transverse Myelitis. Did they do an MRI with contrast? I have only heard of a couple of people without a spinal lesion that were thought to have TM. I think going to Mayo is a great idea or at least another Neurologist. Perferably one that specializes in MS because they know more about TM.

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I went through 2 years of testing for various things including MS and other types of reasons that I was having difficulty with my legs and headaches. No results and they treated me often like it was all in my imagination. They are now looking at a Cerebralspinal fluid leak. With steroids headaches and ability to walk improve. This was found out by chance as I was diagnosed with breast cancer and got the steroids as part of that treatment. I got my energy back, was able to walk well, and did not have headaches for several months. When the headaches came back two trips to the hospital for severe headaches a trial of prednisone was the only thing that relieved the headache (morphine did nothing). One of the other symptoms that I have is back pain (kidney area and other areas). These pains come and go and did not seem related to headaches and legs other than all were only on my left side. When all pains were gone for several months I noted that all returned at the same time - not necessarily on the same day, but all within a few days of each other. It then appeared that they were in some way related. I am still trying to work out what this is all about. I am 60 yo now, but over the last couple of years that I felt like I was 90 when trying to move. I felt better and able to get around better during Cancer Treatment., Hope all goes well for you and good luck.

REPLY
@madsel

I'm sorry, I don't have any answers for you but I want to tell you that you are in my prayers. Keep pushing these Doctors and being a strong advocate for your daughter. You are doing just that! Even though your local Doctors are telling you nothing is wrong, you know something is wrong. God bless you and I hope that you find out really soon what is happening. Run don't walk to Mayo and find out what's happening.

Best of luck,

Laurie

Jump to this post

They did do an MRI with contrast. They have not done an LP. I have read that TM can be hard to diagnose without an LP. Do you know?

REPLY
@madsel

I'm sorry, I don't have any answers for you but I want to tell you that you are in my prayers. Keep pushing these Doctors and being a strong advocate for your daughter. You are doing just that! Even though your local Doctors are telling you nothing is wrong, you know something is wrong. God bless you and I hope that you find out really soon what is happening. Run don't walk to Mayo and find out what's happening.

Best of luck,

Laurie

Jump to this post

The LP was clear when my son was diagnosed with TM. I believe that just ruled out some things but dud nor prove that he did have TM. Normally the MRI is what proves TM because of the lesions but a few Have been diagnosed without lesions.
go to http://www.myelitis.org and see if you can get her in Johns Hopkins.

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My daughter had something called Diskitis. Have they considered this?

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