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Thread: Progressing TM?

  1. #1

    Progressing TM?

    Has anyone ever had, or hear of, anyone's TM progressing after 16 years?

    If it progresses can it still be TM? Or am I definately up for a new diagnosis?

  2. #2
    Did your diagnostician consider Multiple Sclerosis? TM , from what I've read on this board comes on more quickly than MS, but MS never ceases to amaze me.


  3. #3
    No, I was diagnosed with TM 16 years ago and I have had a relapsing and remitting form of TM (apparently pretty rare). In the last 7 months my symptoms have become more frequent and more severe, along with some new symptoms I have not had before. So now we are starting all the MRIs, blood work, etc. all over again.

  4. #4
    Senior Member lynnifer's Avatar
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    Aug 2002
    Windsor ON Canada
    That's a new one for me. I've never heard of relapsing/remitting TM. I've had it since I was 12 in 1985 - though I was completely paralyzed from the waist down and that was it.

    I wonder if it was a mis-diagnosis and you actually had MS? What's your age if you don't mind me asking? Some of the research shows that young people will tend to stick with TM and never have another episode but if you're 40 (in 1995?), it might be MS. I'm no medical person though.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  5. #5
    Sorry for not answering this sooner. I did not see your replies on the board.

    I was first diagnosed in 1996. They did not see any lesions on the brain MRI, so they did not diagnose MS, but at that time the neuro who diagnosed TM stated he could not rule out MS. MS was not ruled out until about 10 years later. But now I think they are looking for it again.

    I am 51. I got TM when I was 35.

    When I went to see the neuro this time he told me that several years ago there was a "small white spot" on my brain, but that it was considered normal due to my age. He said at this point I would have to have 15 or more of those for it to count as abnormal.

  6. #6
    I just got a call from the neuro's office. My MRI is set for about a week and a half from now.

    So, when I went to the neuro I asked him if I had ever had an MRI of my entire spine and he said yes. But when he checked he found out they had done my brain and c-spine but never the entire spine. So that is what he told me he was going to order, with and without contrast.

    But they scheduled brain, c-spine and t-spine. Do they not image the lumbar region? I feel confused.

  7. #7
    MS-type plaques are not typically found below the thoracic area. An MRI of the lumbar region would image pathologies such as arthritic changes, bulging discs, and many more. Evidently your neurologist suspects MS and is specifically looking for it.

  8. #8
    Regarding your earlier post about brain lesions: there is not a 1:1 correspondence between the number of brain lesions and severity of disease. People with many lesions can have very few symptoms, while others with only a few lesions can be seriously debilitated (I personally knew a man who had 95 visible brain lesions at one point, but his disease had been stable for 20-plus years). Much depends on the location of the lesions, and whether or not they are actively inflamed. In addition, MS lesions tend to have a different appearance from lesions associated with related conditions.

    According to the National MS Society, 5% of MS patients do not have any visible brain lesions. Lesions in the cord are the most likely to cause problems with ambulation. Recent research has shown that a visible brain lesion is the culmination of years of subclinical inflammation. On the other hand, the aging brain can also develop lesions (as your neurologist has pointed out) - so the picture is not always straightforward.

    MS can be difficult and time-consuming to diagnose, which is why a lumbar puncture is often used to support (or refute) other data. Your neurologist will rule out MS mimics via a combined investigation looking at your medical history, blood tests, imaging studies, and perhaps (depending upon what those show) a lumbar puncture. I'm glad that you're having new studies performed, as much has changed in the field of neurology since your earlier assessment.

  9. #9
    Thank you. It helps to have you all to encourage me. I get so discouraged. I am at the point of praying just to know what it is, even if it is bad news. If it is bad, then I need to know. I have a child to take care of and I need to plan. I hope it is "just" TM and that I have done this by overdoing. I sort of got myself elected president of the PTA...great for the school, bad for my health. Maybe if/when that goes away, I will go back to what was normal for me a year ago? Please! Oh man, I am really scared!

  10. #10
    The fear is overwhelming initially. You have gotten used to the idea of TM, and suddenly something else throws its shadow over the familiar landscape. You are at the point where you need to identify it, to "know your enemy." But you will get past the worst of the fear, because - regardless of label - few neurological disorders are fatal in and of themselves, and there aren't even universally helpful treatments for most of them. One just lives with these conditions, managing symptoms as best one can, and there are a variety of approaches along those lines. You will be there for your daughter.

    You might never develop more disability than you have now, or you might need a wheelchair at some point - either intermittently, or permanently. But you will cope. You will still be able to find joy in life, and to express whatever you sense your purpose to be (albeit perhaps in a different way than you envisioned). I can tell from your posts that you are strong, determined, intelligent and creative - these are the traits that best serve us as human beings, regardless of physical condition. The diagnostic process is frightening, but when the facts are in you can engage them realistically, in your own unique way - and I have no doubt that you will.

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