[Nimrodel]

Hi,

I'm a 19 year old woman who's been having episodes of transverse myelitis in addition to other symptoms for the last six years. In 07, when I had just turned 13, I got acutely ill with the textbook TM: muscle spasms, progressing paralysis, binding pain, hyperreflexia etc. At the ER they dx'd me as Acute Idiopathic Transverse Myelitis and treated me with two weeks of IV steroids (after the first week symptoms returned so they re-hospitalized me for a second round). A slow and bumpy recovery ensued. Since then, I have had relapses (less severe) of TM as well as misc other neurological symptoms - sensory changes as well as severe shortness of breath caused by spasticity of the abdominal wall muscles and perhaps mild diaphragm weakness. Currently taking a round of 'roids for my latest TM relapse. Stickler: I have absolutely normal tests. MRI's w/o contrast of brain & spin; CSF; even an evoked potential. Every blood test available, including NMO IgG. Everything completely normal. At first neuros thought I was crazy, but now (after the history and objective neuro findings) they just don't know. Was seen at the UCSF MS Center who, on first visit, thought I had MS but after normal tests did not know. Current neuro is waiting for some confirmation before dx'ing MS: positive brain or spinal MRI or, he says, solid evidence that the disease was involving some other spot in my CNS and not just a specific band of spinal cord. Whew! There's the tirade. Sorry for all that babbling! Just really wondering if anyone has experienced anything like this - spinal-only MS and/or clear MRI's?

Thanks! And wishing everybody a peaceful and healthful neuro system in this new year!

[Erika]

Hello Nimrodel and welcome to NT.

I'm so sorry that you are going through the "nasties" of Transverse Myelitis.

Quote: Just really wondering if anyone has experienced anything like this - spinal-only MS and/or clear MRI's?

Some people do develop symptoms of MS while the MRIs and other tests remain clear...at least for a while. It seems that some lesions take time to show up (especially in the spine); and/or some MRI Tesla strengths may not be strong enough to show small lesions.

It may take a while for the docs to figure out if you are dealing with TM, partial TM, and/or MS; so please try to be patient and most of all, be kind to yourself. The road to diagnosis for MS is often a long one...as it is often a process of elimination.
The sensory changes, pain, spasticity and even the shortness of breath (due to abdominal muscle spasticity known as 'the Hug'), can all occur with MS; but there are usually some other findings on tests that indicate MS rather than TM.

At least so far, it seems that your tests have consistently been clear for MS, but then again, some of the symptoms of TM might not be classic enough for your docs to arrive at that exclusive diagnosis either. They might settle on a diagnosis of Partial Transverse Myelitis, at least until some lesions show up on MRI.

I have experienced MS bouts and partial TM episodes, both separately and together; but I had MS symptoms (optic neuritis, lower limb spasticity, pain and tingling) before my first TM episode. My partial TM experiences have been more like what you describe; although there was also ascending spastic paralysis that affected the legs with the more severe bouts of partial TM.

Sorry but I can't say what would have shown up on MRI in the early stages once I had gone through a couple of MS and TM bouts; as MRI was not available/used back then (circa 1978-1988). Now after 35 years of dealing with these neurological disorders, there most certainly are lesions in the brain, as well changes in the spine that show up on MRI.

It sounds like your docs are doing their best to get your symptoms under control while they figure out what is going on. Hopefully they will find out the 'why' this is happening to you and will then be able to offer something to prevent it from happening again.
I'm not sure if the disease modifying drugs (DMDs) that are used for MS work on TM, or if there is something that might work on both; but your docs would probably know that and might offer that option at some point.

Please keep us posted on how things are going with you. We are here to support you and hopefully some others here can/will offer some insight along the way as well .

With love, Erika

[NurseNancy]

hello nowakes and welcome to NT,

it can be possible to have MS and the lesions not show up for a while on mri.
but it does seem a bit odd since it sounds like you've had this for a while. and, if you're in an active flare the lesions should show up as active. odd.

did you have the mri with contrast? that shows the lesions better than without.
at least your drs are validating you and tx'ing you. i hope the roids help.
please keep in touch and let us know how you are.

[NurseNancy]

hi nimrodel and welcome to NT,

i don't know about your situation but wanted to say hello anyway.
others will be along to help too.

check out the other forums on the site as you may find some that will help you.

[NoWakes]

Originally Posted by NurseNancy

hello nowakes and welcome to NT,

it can be possible to have MS and the lesions not show up for a while on mri.
but it does seem a bit odd since it sounds like you've had this for a while. and, if you're in an active flare the lesions should show up as active. odd.

did you have the mri with contrast? that shows the lesions better than without.
at least your drs are validating you and tx'ing you. i hope the roids help.
please keep in touch and let us know how you are.

I did have contrast. It is odd. They want to redo the mri's again, but it's too soon I think. I'd like to wait a while, it's too much at once for me. Get past the optical crap first. I don't know exactly what the lumbar puncture showed, but they said it was positive. I just don't get it and am very unsure. I may want to get a different set of eyes on my tests after the optical part clears.