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Thread: Progressing TM?

  1. #21
    Some Russian guy posted spam on my thread! Ewww.

    Okay, so I decided this may be my new normal. In the past this much resting would make me improve. So far, I'm staying about the same. I decided I need to stop waiting to get better, assume this is going to be my level and go forward, adjust.

    So, today was a better day. Not physically. That is the same. But, my attitude was much better. We had a special event at school and I just worked. I also set limits and advocated for myself. This is who I am. I cannot do extra walking. I cannot stand in a line and wait. It worked out.

    I am reading all that you are writing over and over. I cannot deal with the concept that I might actually have MS and moved into the progressive stage. This would mean that I totally missed the opportunity of treatment during the R&R stage. The whole idea of this makes me feel like I want to explode. Because I was told about 5 years ago that I do not have MS, that I have TM, that it will be stable and not progress, and that there is nothing they can do, that will be $600, you can pay on the way out, have a nice life, good luck to you. So, I cannot deal with it right now. If it turns out to be that way, then I will deal with it then.

    This does not mean you guys should not discuss it amongst yourselves. I am reading everything. I just cannot respond, but I am learning and it is helping me. I did not think any treatment might help progressive MS. But seriously, how do they know? Sigh.

    Thank you all for writing. You make me feel stronger. Today was a pretty good day, and I keep telling myself that I adjusted to my previous level of disability and I will adjust to this also. A week ago I couldn't figure out how to put my pants on. I already have figured that out. It is just going to take some time and relearning new ways to do just about everything.

    I appreciate your encouragement.

  2. #22
    Quote Originally Posted by SunnyDaisy View Post
    I cannot deal with the concept that I might actually have MS and moved into the progressive stage. This would mean that I totally missed the opportunity of treatment during the R&R stage.
    First, it remains to be seen whether or not you actually have MS, or TM compounded by something else, or perhaps another condition altogether. And even if you have MS, you might not be in the progressive phase; you might be in the middle of an intense relapse, instead. In any case, drugs for the progressive phase are in the pipeline and in clinical trials, and some doctors think that the relapsing-remitting meds might also help progressive disease.

    The main thing to remember is that the meds don't prevent relapsing-remitting disease from becoming progressive; they only limit the number of relapses a person is statistically likely to have in any given year. So if you do have MS, there's no reason to beat yourself up for not having been on meds for the past 16 years - the disease is not cured or halted by the drugs, only modified.

    While it's certainly no fun to contemplate having MS, it's no more permanent than TM - and you might never develop greater disability than you have now. There is no way to predict the course of MS, period. Even in the progressive phase of the disease, a person's symptoms might not worsen dramatically; but debility will linger, instead of seeming to go away. And as I said in an earlier post, some doctors nowadays think that the MS staging system, itself, is unrealistically rigid.

    Take things a step at a time and don't be hard on yourself - be as gentle with yourself as you would be with your child. Have the tests, learn the results, and then make some decisions if you need to - but treat yourself with compassion, patience and understanding. Allow yourself to feel whatever you're feeling in the moment, but also permit your spirit to buoy you to the surface after awhile.

  3. #23
    Thanks, Bonnette. It is always hard dealing with unknowns. I am trying at this point to focus on problem-solving and taking care of myself, and not freak out about possibliities. I can't really afford to get my hopes up about any kind of treatment, since it never has been possible up to now. It has always been a matter of trying to figure out how to have the best quality of life within the limitations of my illness, and that hasn't changed. It is just that the limitations have intensified, so that my old systems no longer work for me. That's hard, but you all are right that I will figure it out. It is just going to take some time and trial and error.

    I just got an appointment to meet with the MS counselor on Monday morning. Curious to see how that goes. My girlfriend said, "Maybe they will tell you it is all in your head and take this pill and it will go away. Wouldn't that be great?!" Sure would! lol.... This is one time I would LOVE to be crazy! Wow! lol

  4. #24
    If you're meeting with an MS counselor on Monday morning (which will be prior to completion of your MRIs and/or other diagnostic studies, if I understand the timeline correctly), does this mean that your neuro has already given you a presumptive MS diagnosis?

  5. #25
    She sort of asked me the same thing, and I have no idea. He and I do not seem to communicate well together. But, he is the only certified MS doc in town. I find him absolutely inscrutible and we have miscommunicated with one other numerous times. Maybe she will be able to help with some of that. We'll see where it goes.

    My current diagnosis appears to be "weak legs." That is what he wrote on the lab work. Who knows?!

  6. #26
    Here is what I think, and it is worth what we are collectively paying for it! I have symptoms in one system: my legs and bladder (that is one place for neuro purposes, right?). He asked me lots of questions about "have you had any vision problems at all?" "Have you been dizzy at all?" "Have you had any vertigo?" "What about confusion. Any problems?" I am always confused; just ask my teenager! lol But seriously, I think basically my same symptoms just got worse. I did not develop a problem in a new area.

    I have had problems in these other areas in the past, but that was before I was seeing this doctor, so I guess they don't count. Besides, they mostly went away. I think I had some kind of encephalitis when I was first sick, as they told me I had "a virus that is causing inflammation in your brain." Lots of vertigo, horrible headaches, an inability to think, extreme malaise.

  7. #27
    I have a question. How do you know if you are confused?

  8. #28
    At some point, trying to figure out the entire history of symptoms becomes an exercise in frustration - one can't always know, looking back, which prior issues have a bearing on the current situation. Some things stand out, certainly, especially to the trained ear and eye, and it's the neuro's job to put all of that together. Your neuro certainly seems to be asking the right questions. Unfortunately, neuros are quite often inscrutable and difficult to communicate with. So, yes, the MS counselor might help you to straighten out a lot of the twists and turns you've encountered lately (whether or not you actually have MS).

    I suggest you prepare a list of specific questions between now and Monday, and jot down all of your random thoughts related to the diagnostic situation. At least you won't have long to wait for some answers...it's those weeks- and months-away appointments that cast such dark shadows.

    Regarding how to know when you're confused: I take "confusion" to mean pervasive mental fogginess and disorientation, such that it is difficult to recognize and focus on daily issues and tasks.

  9. #29
    Like brain fog you mean? I've had that to a greater or lesser degree since I got sick 16 years ago. One reason I cannot work. One reason I have social problems with the PTA president position. I forget things, lose track of when things need to be done. It has become normal for me. I write everything down and I still forget. Or I think I have done something, but I haven't. I have only thought about it and not really done it. I have been this way for years.

    It is too hard to figure out. I'm not going to try.

  10. #30
    Quote Originally Posted by SunnyDaisy View Post
    Like brain fog you mean?
    Yes, as you describe. Brain fog is not diagnostic - it's just one aspect of the overall picture.

    It is too hard to figure out. I'm not going to try.
    Exactly. That's the exercise in frustration I spoke of earlier. Have the tests and if you trust the doctor, let him put the pieces of the puzzle together.

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