Mitral Valve Prolapse and Transverse Myelitis: Part III

What is TM and How Does it Affect the Nervous System?


Transverse Myelitis (TM) is a condition caused by inflammation of the myelin (the insulation covering the nerves) in the spinal cord. Wherever the lesion is located on the spine, all of the nerves below that point may be affected (either permanently or temporarily, which is why healing with TM can be either full, partial, or non-existent). I’m fortunate in that my lesion is at T6 –T8. For many people, it’s higher and their arms and even lungs are affected. They can become quadriplegics and can’t even breathe without a respirator. TM has been compared to multiple sclerosis (MS), except that MS lesions can be in the brain, whereas TM is only on the spinal cord. TM is generally thought to be a one-time occurrence, while MS involves multiple lesions. The ‘transverse’ part refers to ‘across the spinal cord’. I’m also lucky here. Only one side was totally paralyzed; the other side had (has) only minimal numbness. I’ve been said to have a ‘light case’.

That said, what’s my problem? I seemed to be healing pretty well, and then after about 9 months, it started to slow down, and even regress. I became concerned and pushed myself even harder to exercise, which only made it worse. I started to notice that some of my biggest problems were similar to the ANS dysfunction of MVP, but only now they were exaggerated! (That was enough to panic me!) I read more about the little that’s known about TM – another condition that doctors don’t know much about but in this case, not because it’s not serious but because few doctors have seen very many cases. It’s considered ‘not rare, but unusual’. I was really lucky that the ER neurologist recognized it and began the proper treatment – 5,000 mg of methyl-prednisone over 5 days – which needed to be started within 12 hours of onset to prevent permanent damage.

Well, guess what? One of the side effects of TM is – you guessed it – ANS dysfunction! Just what I needed: a double whammy! As a matter of fact, this is how Johns Hopkins Hospital’s Dr. Douglas Kerr, one of the chief researchers of TM, defines the condition: “Acute transverse myelitis . . . is a focal inflammatory disorder of the spinal cord resulting in motor, sensory and autonomic dysfunction.” And fatigue, along with a myriad of other things, is listed among the common symptoms of TM.

Only now, the ‘walking for exercise’ thing couldn't be applied because I couldn't walk – and when I finally could, it was too slow to be considered ‘exercise’. Any kind of walking created so much tension that it soon built up and turned to migraine (remember how with ANS dysfunction, built up tension is more likely to get ‘stuck’ there). Migraines are such a pain (pardon the pun) not only because of the pain and nausea, but because of the days of my life that get lost before I can fully recover from each serious migraine. I need exercise to improve but too much, builds up more tension which . . . (are you starting to get the picture here?) In addition, I needed to walk to help re-build my bone density, which had been royally zapped by the 5000 mg of steroids used to arrest the inflammation!

Watch for Part IV, the Conclusion, to read about what I've done and where I am now.

(That's if you still want to go on, after all this reading! That's why it's in 4 parts - not because I'm trying to leave you in 'suspense', but the whole story's kinda long. If you've followed it thus far, I'm impressed. If no one has, it doesn't matter. I've put it on paper for my own satisfaction. And if anyone asks, I don't have to try to explain it - again. That way, if they're just asking to be polite, I won't have to bore them. If they really want to know, they can read it. :)