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Is fatigue considered a relapse: Transverse Myelitis

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  • Is fatigue considered a relapse: Transverse Myelitis

    I have Transverse Myelitis. On October 31, 2005 I collapsed and was unable to move from the waist down. I was paralyzed (T12) for a year. I then began to get movement back and started to walk with crutches. After a while I was able to walk without any device. That has been a year and a half ago. Recently I have been having weakness in my legs. I start off walking fine then I get to limping and stumbling. I do go to college and have to walk up a big hill but I did that last year. I will say that I am more active this year and am not stopping to sit down and rest like I did last year. I also was very active this summer. Could all of this just be catching up to me and fatigue setting in? or could this be a relapse? I now have to use forearm crutches. I am scared that a relapse has happened! Any advice?
    Last edited by football23; 09-30-2008, 12:29 PM.

  • #2
    Fatigue does go hand-in-hand with TM. I've had to alter my life because of it (getting quality, lengthy sleep). Your description of your first attack is pretty much like mine - save for the walking part - lol. Paralyzed from the waist down since 1985.

    If you're worried about it, I would definately seek out your neurologist again for an examination or follow-up. You should try to keep in contact with the one who diagnosed you ... just my advice.

    I believe the younger you are, the lesser your chances of a second attack.

    Unfortunately, you might have to accept that you can't keep up and have to make some alterations in life to try and keep up - whether it's school, work or a social life. More rest, plan expending your energies better, etc.
    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


    • #3
      I agree that you should see a neurologist - do you have a good one, perhaps one who is a specialist in multiple sclerosis (often these neurologists are the most experienced with transverse myelitis). Did you start using forearm cruches on your own without seeing a doctor? Has this progressing over a long period of time or a short one?

      A careful neurologic exam should help determine if you actually have any new subtle weakness, or sensation problems in your legs that could explain your fatigue with walking. It may be time for another MRI of your spine, and a couple more blood tests to check what's going on. Depending upon what's going on, there may be possible treatments, so it's worth a shot.

      Also, sometimes when you have another simple problem going on (tired/UTI/thyroid out of wack etc...) it can make some of your prior symptoms of weakness rear their ugly heads again. Often, these can improve once you treat the issue.

      I wouldn't start worrying yet. It sounds like you have done amazingly well after your prior attack. If this is something new, there are things your neurologist might be able to contribute.

      Good luck.
      Last edited by hlh; 09-30-2008, 07:48 PM.


      • #4
        Thanks for the input. I am going to the neurologist in a week. I hope he can tell me what is going on. My thyroid may be messed up or it may be I just need more sleep. Who knows!! If anyone has anything else they think may be messed up with me, (that my be causing my problem) please let me know. Check back I will let you know how my doctor visit goes.


        • #5
          I now know it is a relapse because I am having to use a wheelchair most of the time. I can't wait to hear what the doctor has to say. Probably nothing! I have been to numerous doctors and all say that they can't find anything. I would have to have a rare condition.


          • #6
            I'm so sorry things are getting worse. Hang in there!!

            Yes, it is very frustrating to have a rare condition and feel like people are not comfortable/familiar with treating you. But honestly, I am hopeful that your neurologist is decent and he/she may have some ideas. Maybe you need a round of steroids? Or IVIg? You definitely deserve another MRI to see what's going on.

            Let us know how your visit goes.


            • #7
              I went to the doctor today. He said without running a bunch of test he would not know what was wrong. He suggested I go to Mayo Clinic. This is where they will run test for two or more weeks. NO THANK YOU! I am not some lab rat! If they told me what was wrong their is probably nothing that can me done to treat it. So what is the point!
              It is time I moved on with life. I have very little movement now and can only stand for about 10 seconds. I can take two steps and then I fall. So I guess this is it. Now to start living the life God gave me.


              • #8
                Thanks for all the post!


                • #9
                  Football23! I don't understand this! You are WAY TOO YOUNG to be giving up after visiting one doctor. Do not accept this. You need to figure out what is going on, how it is related to your prior episode of TM, and how to treat it.

                  Yes, it can be very frustrating when you don't get a clear explanation about what is going on, but unfortunately sometimes these neurologic problems are puzzles. You have told us you had transverse myelitis in the past, but remember that this is just a descriptive, "catch all" term for inflammation across the spinal cord. It doesn't tell you the cause of it. Sometimes we can't figure out the cause. But sometimes we can, or sometimes over time the cause becomes clear. And while it is true that sometimes TM can "relapse", there are also several causes of TM that can be related to other treatable systemic diseases (lupus, arthritis) or kinds of infections, or even multiple sclerosis. While some of those things may sound like things you don't want to think about, remember some of them do have some treatments! And even TM itself can have a treatment when you have a flare of symptoms or a relapse. Steroids, plasma exchange, IVIg, other medications....

                  SO YOU NEED SOME TESTS! You need a competent neurologist who can try to help.

                  Who was this neurologist you just saw? Is he the same doctor you have been seeing since your TM in 2005? Do you trust his judgement at all?

                  It is unclear from your story how quickly you have gotten worse. When were you last "normal"/at your baseline strength? If you were walking without assistance (days? weeks? months?) ago and now you can't even stand for 10 seconds...... if I were you I would call up my family or a good friend tomorrow and have them drive me ASAP to the best nearby academic hospital and take me to the emergency room. Once there, ask to see a neurologist because you can't walk, are at risk of falling and your neurologist told you to get to the Mayo clinic and you couldn't go that far! It would be nicer if you could get an urgent appointment in their Neurology clinic so that you wouldn't have to spend a lot of time in the Emergency Room, but if you have been getting worse over a rapid period of time (days/a few weeks) you need to do something about it pronto.

                  Consider calling Dr. Sidney Houff at the University of Kentucky (Lexington) tomorrow morning. He is an expert in multiple sclerosis and neuroinfectious diseases and this would hopefully be someone familiar with your history of TM.

                  Phone: (859) 323-6702

                  Tell him (his Nurse? his secretary) you need help. You can barely walk. Is there any way to be seen urgently? Either in clinic or should you go to the Emergency Room.

                  Even better, if you could go to University of Washington in St. Louis, Missouri - that is one of the most outstanding Neurology departments in the country.

                  I know you are feeling down about this, but you are young and healthy and clearly very tough to have gotten through such a scary illness and recovery in the past. So don't stop fighting now!

                  You should not decide not to look for the cause of a problem, because you don't think they can do anything about it.

                  Keep us posted.


                  • #10
                    Before you start giving advise about what I should do, let me give you more history. This is not the first doctor I have went to. I was in a wheelchair once before for a year and two weeks in 2005. I went to John's Hopkins and two other neurologist in Lexington. I even went out to California to a wellness clinic. No one could tell me what was wrong. I had numerous painful spinal taps and other painful test. Each test would get my hopes up that they may find what was wrong. In the end they never could find what was wrong. I finally got better.

                    This relapse is not the first relapse I had, this is the third relapse I have had! I hate being in this damn wheelchair! I don't however want to start walking again and get it taken away again. That gets me more depressed than being in this stupid wheelchair. I don't want anymore test eather. I don't think I could handle it.

                    It is now time for acceptance and to live life!


                    • #11
                      It is unfortunate that Transverse Myelitis remains a mystery.

                      If it were me, I'd try to hold on to what I had with everything (doctors, PT) ... but you have to live your life every day, not me. Good luck.
                      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


                      • #12
                        How utterly frustrating for you.

                        I still feel bad that you can't get more answers - and still hope you don't give up trying to find them.

                        I hope you have one neurologist who has known you from the beginning. Please keep in touch with someone. Even if it's just a phone call to the doctor who took care of you at Hopkins....

                        While science/discoveries never seem to move fast enough (as everyone on this site knows...), new information/interpretations/tests/treatments are coming along all the time. You never know....


                        • #13
                          Dear Football123,

                          I'm newly diagnosed with TM, so I don't have a lot of advice. But I do wish you the best life possible. Maybe my story can help in some way:

                          I started having autoimmune related diseases about 4 years ago when I was 29, but I didn't have health insurance, and I ignored it and went on with life as usual. Since I got my first diagnoses (chronic kidney disease...most likely caused by autoimmune; and perniosis) 2 years ago, I have been diagnosed with several other conditions, including vasculitis, psoriasis, and psoriatic arthritis. I still don't have a complete diagnosis, but I have doctors I trust working on my case, so I'm leaving it to them, dealing with the TM from moment to moment, and trying to stay positive...which is a major challenge. Today, I can barely walk; it's more like a stuttering shuffle and I go back to the hospital Tuesday for 2 weeks of treatment.

                          Also, I "fired" my first doctor because, a) I didn't trust him and b) I didn't like him. I have a wonderful PCP who has directed me to the best possible physicians for my care--ones that are at the top of their game and have a bedside manner that works with my personality.

                          I hope that some day you will have the opportunity to have the right doctors on your side.



                          • #14
                            i got TM also. it happened last november and i have almost all movement back except my ancels and toes. i walk w/ a walker at home and friends houses but i use a wheelchair at my high school.
                            im 14 and this happened to me when i was 13.
                            im doing very good my doc said and they expect to have a full recoverie
                            idk how to spell that, ahah!


                            • #15
                              and also i wanna be a physical therapist when i grow up, i wanna help people like so many people are helping me. im taking biology and bio/med and im a freshman. they're soo hard but its gonna be worth it when i help someone walk again, like MANY people are w/ me