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Anyone here who has had TM?
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7293.2 in response to 7293.1
I'm not the cl, but you are definitely welcome here.
For the most part, Transverse Myelitis is simply an unexplained single incident of spinal cord lesions. If it happens more than once, you meet the criteria for diagnosis of MS; if it never happens again, yay you don't have MS.
You might already know this, but there are generally three types of lesions that arise in MS - lesions in the brain, in the spinal cord, and in the optic nerve. The disease exhibits itself differently in different people. I personally have mostly spinal lesions. The first time it happened, the doctor called it Transverse Myelitis. Then, when several years later I had optic neuritis, followed quickly by a second spinal lesion, I was diagnosed with MS. Luckily, my brain has not really been severely affected. Apparently this isn't unusual -- my neurologist says that there is a significant subset of MS patients for whom the disease shows up mostly in the spinal cord and optic nerves (and apparently this is more common in Japan than the US for some reason!).
But regardless of where our MS has manifested itself, what you are going through now is actually exactly what everyone with MS has gone through before -- trying to deal with recovering from an event causing damage in the central nervous system while also dealing with the uncertainty of what the future has in store. It sounds like you've had a particularly bad episode to be in the hospital for 6 weeks. I'm sure it's taking most of your energy to just deal with getting better. And it's such a long process - nerves are notoriously slow healing. Once you get a little breathing room, I'm sure you'll start feeling the anxiety of "Is this going to happen again? Do I have MS?" - that is if you haven't already been freaking out about it. The best thing you can do during this time is educate yourself and plan and be ready if it does happen again. I was in a bit of denial after that first episode of "Transverse Myelitis", and in retrospect I feel like I was a bit slow to react constructively after the second episode because I was finally dealing with the reality of the situation. I wish I had thought through and decided in advance what I would do if it happened again, which would have led to me starting disease modifying drugs about 6 months earlier.
It's hard to do though - it's hard to prepare for an unpleasant possibility without getting really stressed out by the uncertainty and the fear. Denial looks pretty nice, especially when there's a good chance that you may never have a second episode and never be diagnosed with MS. So I'm not saying it's easy. I just wish I had done a better job of managing to prepare myself in a constructive way for the possibility of MS. In retrospect, I'm a strong believer in starting disease modifying drugs as soon as a MS diagnosis can made, which is after two different episodes separated in time.
You may also want to take this opportunity to get other things in order before a possible diagnosis of MS. For instance, if you are diagnosed with MS you'll probably never be able to get long term care insurance. That might be something you want to look at getting now. There's definitely a tension between, on the one hand, not wanting to label someone (or be labeled) with an official diagnosis of an incurable chronic disease and, on the other hand, wanting to be aggressive about making that diagnosis so that treatment can start as soon as possible. The more you can prepare now for a possible diagnosis, the easier it will be to navigate that tension if and when it arises. Does that make sense?
