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    #16
    What happens in a case like this with the MS-drugs?
    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

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      #17
      First, MS must be definitely diagnosed. Insurance companies will not pay for the meds, absent the diagnosis. MS drugs are specific to that condition.

      There is presently a debate within the medical community as to whether or not MS meds are of any benefit in progressive forms of the disease. Previously, it was thought that meds would only delay the onset of progression, but some researchers now believe that treatment might slow progressive forms of MS, as well (on the premise that subclinical inflammation is a characteristic of MS, itself - which would signify that remitting v. progressive categories are essentially meaningless).
      Last edited by Bonnette; 26 Jan 2011, 9:17 PM. Reason: clarification
      MS with cervical and thoracic cord lesions

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        #18
        Originally posted by SunnyDaisy View Post
        I guess my expectations are arising from the fact that I have had TM for 16 years and have developed ways to get things done, and to manage my "relapses" when I have them. But now my methods are not working. All the things I have always done to get out of a relapse are not working. I feel exactly the same as I did that dreadful winter 16 years ago when I first got TM. The only difference is that I now have a child to care for. She is the most important thing. Right now, most of my energy is going into caring for her, trying to keep her world as stable as possible. But, she needs a lot of stimulation I am not able to provide right now, and I feel pretty guilty about that.
        Sunny, one other difference is that you are now 16 years older! We all have to deal with getting older and possible limitations, but when you have a chronic health problem, it's amplified. You have to conserve your energy by simplifying as much as you possibly can. You also need to do everything possible to take good care of your health. You may have to adapt your methods and be creative about new ones.
        This has been a hard winter. Things may improve for you when the weather warms up and you may be able to make progress on things that may have piled up. If you perceive "relapses", you might want to keep a journal to see if you can identify patterns. Nothing elaborate! Just use a cheap spiral notebook, keep it in a handy spot, and jot down anything that comes to mind...milestones, things that help, things that don't help, times you can't sleep, strange symptoms, periods of improvement, especially tiring activities, whatever. Date each entry. Read back through this every month or two to see if you see any trends.

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          #19
          Originally posted by SunnyDaisy View Post
          I was walking a little better this evening and took the garbage out. It is garbage night, so I had to take the can to the curb. The driveway was getting longer and longer as I pulled the can behind me (it is on wheels). Isn't it strange how a driveway, a hallway or a staircase can do that? It is like they stretch out away from you, so the more steps you take, the further away your goal seems.

          I didn't think I would make it back to the house, and then I went to get my dog out of the backyard and she ran off. She's a pug and cannot stay out in the snow, and may not find her way home. So I had to go get her. She was in the front yard, but when I finally got back inside the house I felt like I had walked across a mountain range!

          My girlfriend is going to come by after work and bring the garbage can back to the carport tomorrow. But, this is my responsibility. I have to find a way to get my chores done. People cannot be coming by after work to do my chores for me! They have their own chores!

          I have not been able to do anything more than the essentials since May. The house is starting to get, well...you just can't put off the deep cleaning for that long without some consequences. And now it is getting harder and harder to do the essentials. I told you about the laundry problem, but now there is also a dirty dish problem since I can't seem to stand at the sink longer than about 5 minutes. There are only 2 of us, but still.... I should change the sheets on my bed, but I am too tired. Everyday I consider it and decide to do it the next day. The clean sheets are still in the basement. There are too many things that are like this.

          Having a messy/dirty house makes me feel worse. If I can get a little bit done it lifts my mood, but then I can't walk. I feel like I am caught in a bind.

          I feel like my stamina is down to zero. I am trying to rest, eat healthy foods, get enough sleep, avoid stressing about things. I should be getting better, but I am not. How do people manage this?
          Sunny, take the garbage can out when you are the most energized. Same with bringing it back in. If you are lucky to have a friend who is willing to help you, accept the help (As long as you don't overburden the person. Most people are glad to feel that they can do something small that will really help somebody else. Buy or make her some small thing occasionally, if you can. For example, make a simple Thank You card & send it or give her flowers from your garden.) Is there a neighbor child that bring in your garbage can for 50 cents each time?

          Plan ahead to avoid any known pitfalls. Hypothetical example, if you bring your dog in from the back door, she won't be able to run away, but if you open the gate from outside to get her, she could slip out & run away. Moral - only bring her in from the back door. The point is that you have to plan everything ahead in detail to avoid problems.

          Pick ONE chore to tackle per day and rotate through them. If you feel pretty good one day, then maybe do two or three (but don't overdo). If you can only wash half the dishes & then the pain gets too bad, stop and lie down or do something else. If you feel better later, then do the rest. Use as few dishes as possible. I find that if I decide to tackle half a project, I feel like I have accomplished something and half done is better than none done. Decide that step 1 is to bring the sheets upstairs. Do step 2 later, which is to change the bed.

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            #20
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              #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.

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                #22
                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.
                MS with cervical and thoracic cord lesions

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                  #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

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                    #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?
                    MS with cervical and thoracic cord lesions

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                      #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?!

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                        #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.

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

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                            #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.
                            MS with cervical and thoracic cord lesions

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                              #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.

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                                #30
                                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.
                                MS with cervical and thoracic cord lesions

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