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Conditions and Diseases > Multiple Sclerosis Forum > Transverse Myelitis Symptoms
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Q: Transverse Myelitis Symptoms
asked by: Brogan on March 6th, 2009
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Could it be MS? I'm fifteen yo girl who first got sick when I was twelve. I had muscle spasms, paralysis of the legs to the point I couldn't walk more than a few feet, a foot drop, a binding pain around my chest, very painful backache in my low back, tingling and numbness in my feet, oversensitive skin on my legs and torso, hyperreflexia. Several different neuro's told me I was textbook TM, despite a normal brain and spinal MRI. Treated me with steroids and I made a more or less complete recovery...

For a while. Now it's been three years with on going symptoms. I get trembling in my hands, incredible fatigue, weakness in my legs and hands, tingling on my shoulder blades, feeling like things are crawling on the skin on my feet, vibrating limbs, my legs and hands jerking or twitching involuntarily, difficulty peeing and needing to pee all the time, and lots of pain. It'll be constant for a few months and then gone for a few more, only to resurface with different symptoms down the road. Can't afford more MRI's; neuro says he doesn't know what it is because my MRI's were normal. Won't treat me except with steroids, which I don't want. Also, my mother says she's noticed my eyes darting back and forth really fast, so much that she said nobody could do that purposefully (e.g. I wasn't meaning to do it) but I had no awareness that I was doing it. Other than that, no vision problems.

A few doctors have said it's probably MS, but others aren't so sure. What do you think? All my physical tests have been normal, but my exams are abnormal. What's going on?! Question Question

I'm just so tired of docs saying "I don't know..." Rolling Eyes
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zigemyster
replied on March 12th, 2009
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I'm leaning heavily towards MS.

Not every person who has MS will have lesions and those that do may or may not have symptoms...

Have you seen a neurologist who specializes in MS?

I was dx'd back in 2000 however I've had symptoms since my early 20's, I will soon turn 45. I have experienced many of the symptoms which you have described. It is treatable and if they think you have MS (as long as everything else has been ruled out because there are disease that mimic MS and visa-versa) ... and you are willing to start treatment to slow down the progession...the sooner the better.

It's your body and your life and you deserve to know what is happening.

If you need anything else, ask Smile
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Brogan
replied on March 14th, 2009
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Thanks, Zigemyster
It's nice to hear some verification... so you've had some of the same symptoms? And yeah, I'm pushing my Neuro but at this point he says he'll only give me steroids until somebody diagnoses me! It's so frustrating... just trying to be patient and give it time...

Thanks so much for your answer, though. It helps to have somebody who'll actually tell me what they think!
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juniorvarsity
replied on March 28th, 2009
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transverse mylelitis
I was diagnosed with transverse myelitits in 2006, one lesion in spine on MRI, all CSF findings negative, 2 years later had optic neuritis, multiple lesions on MRI, and finally confirmed the MS diagnosis.

Good luck to you.
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zigemyster
replied on March 30th, 2009
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Re: Thanks, Zigemyster
Brogan wrote:
It's nice to hear some verification... so you've had some of the same symptoms? And yeah, I'm pushing my Neuro but at this point he says he'll only give me steroids until somebody diagnoses me! It's so frustrating... just trying to be patient and give it time...

Thanks so much for your answer, though. It helps to have somebody who'll actually tell me what they think!


Get another opinion.

Some are dx right away and then there are others, like us...

My first neuro dx'd me with MS due to clinical findings and 6 lesions on my brain; then he retracted the dx when the LP came back negative for 'bands'. So I did my research and found that not all patients with MS will have these bands. My 2nd neurologist said that my chances of having MS was 10% but could change at any time then my 3rd neurologist wanted to keep me full of medication, the more the better in his mind.

One of the reasons I left my first neurologist is that he said he could not allow me to inject myself since I had no bands. Keep in mind other illnesses that mimic MS had been ruled out.

During my travels through these neurologists and empowering myself with information on MS...either from the MS Society website; MS magazines; support groups; seminars, etc. I decided to go back to my first neuro (I absolutely love his staff)and discussed where I was at; where I had been. He had new info on MS and I had info to share with him (they don't know it all so sometimes the patient needs to bring this to their attention and if they bristle that the patient is involved in their own healthcare then that doctor needs to be dropped like a hot potato).

Anyway it was finally confirmed MS (2nd LP was still negative however other tests were not normal)...

Be persistent...there is a neuro out there who will listen to you and do what is right by you.
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