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Am I The Only One With ?????

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    Am I The Only One With ?????

    My husband has a possible diagnosis of TM and we are learning all we can about it. I am looking for advice as to next step, and any crystal ball predictions or more educated views would be much appreciated.

    Steve began to experience symptoms sometime in the spring of 2005. I am not sure of exactly when it started but he was concerned about numbness and tingling in his legs. In May, we renovated a bath in our house. We live in Georgia and the weather was hot. During the work, Steve became very sick. He was sweating profusely, complaining of severe back pain and his skin was very grey. I finished the work and he rested. Shortly after this, he went to his internist to review the numbness and tingling in his legs. He has a family history of diabetes so we expected that diagnosis. In June, his blood work indicated he was pre-diabetic and he was prescribed oral meds. His blood sugar has been under control since the diagnosis but the numbness a tingling stayed.

    In September he went to a neurologist who scheduled a MRI of the spine. The results were a slipped disc, high in the neck, and an inflamed lesion in the lower spine. I do not know the exact location of either of these injuries. The Doctor predicted MS and was very forceful in his reasoning. A brain MRI, spinal tap and evoked potential test soon followed. All three were “clean” and did not indicate MS.

    At this point Steve has not received any treatment as the neuro is taking a wait and see approach. I think the neuro is still holding out for ms. I understand that steroid treatments are most effective when started close to the initial event and that the diabetes could soar out of control with IV steroids.

    As for symptoms, Steve has the aforementioned numbness and tingling, cold feet, bladder urgency, fatigue, insomnia and banding around the waist. He can clearly remember the numbness, etc, traveling up his leg crossing his trunk and traveling down the other leg. He has no problems above the the banding location. He continues to walk and exercise but he has reduced the length of his walks. He rides and exercise bike for 40 minutes each day, walks at least ½ hour and work 10 hours a day. He is making an effort to relax on the weekends although he is a natural putter type and has difficulty sitting still.

    He has experienced these symptoms for at least 6 months which our research indicates that the numbness, etc, will not improve. Will it get worse? Is there progressive TM? Is there TM mild? Any thoughts on future treatment? Should we seek a second opinion?

    Sorry for the length and I hope I have posted on the right board.

    Deb

    #2
    Originally posted by Wise Young
    arteriovenous malformations (AVM).
    This was my buddy. If anyone wants to ask me about it feel free to ask.

    Comment


      #3
      Hi deb i have transverse mylitis for almost 4 yrs now. If you have any questions that i could answer for you just send me a e-mail. When i first was diagonised with TM they were not sure what i had they thought it was MS. Everyone had different versions of TM. MY leison was from c-5 to t-2. I went to a specialist DR KERR in john hopkins hospital in baltimore maryland. But he did not tell me anything different then my nero DR here in P.A. did. anty
      For every minute you're angry you lose a second of happiness

      Comment


        #4
        Deb, I am sorry I totally missed your post. I don't know if it was a computer glitch or a brain fart on my part.

        If the brain MRI showed no signs of plague the only MS indicator, specifically, I read in your write up is the problem with heat stress. The lower lesion, the banding and the bladder dysfunction all point more towards TM while the other symptoms could be several things.

        I would suggest a second opinion as i have heard of people who seemed to feel badly for quite awhile before being "hit" and down from TM. MS can also be a real bear to diagnose correctly for many. I would think that The Shepherd Center in Atlanta could refer you to a neurologist with good experience with both or you can contact the Transverse Myelopathy Center at Johns Hopkins for an appointment. That does require traveling to Baltimore and they will want originals of all films and records (make copies before giving anyone originals [things I have learned]). You can find the Hopkins information in the stickies at the top of the forum or email dkerr@jhmi.edu and put "Appointment Request" in the subject.

        If it is TM and steroids may be a problem there is a form of blood filtering being used now in some cases that may avoid the diabetes complication problems.

        How is he doing now? Oh, did he have any kind of flu, viral infection or other illness or any vaccines in the spring?
        Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

        Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

        Comment


          #5
          Ischemia

          I have been a CCer for severaal years and have felt a little out of the loop, or mainstream SCI. I had a motorcycle crash in Nov. 2001 in which I was trown violently onto an embankment. This resulted in bruised lungs, fractured sternum, compressed T-4 and T-12, plus a torn aorta. The surgery to repair my aorta required clamping off my blood supply, too long. I am a para from about the t-6 with topical sensation, two thigh aductors that can twitch and a whole batch of neropathic pain. I assume a cure is out of the question?

          Holly Busch
          You C.A.N.
          Conquer Adversity Now

          Comment


            #6
            Originally posted by Redneck
            I have been a CCer for severaal years and have felt a little out of the loop, or mainstream SCI. I had a motorcycle crash in Nov. 2001 in which I was trown violently onto an embankment. This resulted in bruised lungs, fractured sternum, compressed T-4 and T-12, plus a torn aorta. The surgery to repair my aorta required clamping off my blood supply, too long. I am a para from about the t-6 with topical sensation, two thigh aductors that can twitch and a whole batch of neropathic pain. I assume a cure is out of the question?

            Holly Busch
            Hi Holly,

            In don't see why you would be any different from the rest of us. This is why combination therapies are being worked on. If I read you correctly you're a para from the T6 level down due to the compressed T4 and T12? What level was your aorta clamped at? I mean if you still have sensation and even voluntary twitch ability below your injury than you are in the same boat as many traumatic injuries. Torn or ripped aortas occur frequently in MVAs and cause ishmechic injuries. It is those with flaccid paralysis that will, in my opinion, be the most difficult to fix.

            Anything helping with the neuropathoc pain?
            Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

            Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

            Comment


              #7
              Non tramatic SCI

              Hi,
              My injury was from an Epidural Abscess caused by a Staph infection that compressed my cord from C-4 through C-7. The weird thing is that I had this massive infection and no fever. My first symptoms where pain in my left arm which I attributed to a pulled muscle. I went to three different doctors over the course of a week with the pain getting worse. They didn't find the abscess until it completely compressed my cord and left me paralysed from the neck down. They did a laminectomy to remove the abscess, 3 months on massive antibiotics and then onto therapy. That was 7 years ago.

              Joe
              C-5 Incomplete.

              Comment


                #8
                Is Transverse Myelitis more common in women than men? I was just curious because the majority of people I have met or heard of with TM have been women age 40/50 or young girls. Are there statistics on this?

                Comment


                  #9
                  Originally posted by carbar
                  Is Transverse Myelitis more common in women than men? I was just curious because the majority of people I have met or heard of with TM have been women age 40/50 or young girls. Are there statistics on this?
                  http://www.myelitis.org/newsletters/...tter5-1-06.htm

                  The first line or two of the above article tends to suggest the statistics are otherwise as does a paper I remember on an older study in Israel. Both genders tend to get hit equally and the same two age groups of 10-19 and 30-39 or so. Those that develop MS may have more women overall as women tend to suffer more autoimmune diseases.
                  Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                  Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                  Comment


                    #10
                    Thank you for the link. It must be just coincidence that the only cases I have encountered are women. Amazingly, even though it is said to be rare (1-4 cases in a million), there were 3 cases (2 women and 1 young girl) in rehab in Ireland when I was there. One woman got no return at all (T4) and the other two got some return.

                    Comment


                      #11
                      Am I The Only One With ?????

                      Our sticky welcoming newcomers was getting overwhelmed by questions being missed. I figured it would be better to keep the questions down on the forum especially since our longer term members read a sticky once and tend to not go back. They are mainly for new comers.

                      So for those who have general questions about their particular diagnosis or wish to find others with the same diagnosis this would be one of those threads to drop your thoughts in.

                      The Non-Geeky Moderator
                      Last edited by Sue Pendleton; 14 Jan 2006, 11:59 PM. Reason: Clarity
                      Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                      Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                      Comment


                        #12
                        Am I The Only One With ?????

                        Sue, I would suggest that the forum moderators split some of these responses off and create their own message. All moderators have this function available to them.

                        (KLD)

                        Originally posted by SCI-Nurse
                        Sue, I would suggest that the forum moderators split some of these responses off and create their own message. All moderators have this function available to them.

                        (KLD)
                        It seems "split" has disappeared from our list of functions Kathy. Jeff is working on restoring it.

                        No, it is still there. Here is how to do it:

                        Click on the upper right hand corner box of the post(s) you want to move.
                        Go to the bottom of the page and look for the pull down menu at the right (next to the word Moderation).
                        Select "Move Posts".
                        Click on the Go button next to this (which should indicate the number of posts you selected).
                        It will open a page that will ask you if you want to start a new thread with this post (usually what you would want to do with these) or add to an existing thread. If you pick the latter, you need to have already copied the URL of the thread you want to move them to.

                        You do have to move each post separately if you want to set up a separate thread for each.

                        (KLD)
                        Last edited by Sue Pendleton; 15 Jan 2006, 12:05 AM. Reason: cleaning house
                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                        Comment


                          #13
                          Hi,

                          Im Sarah. I am 16 and i was diganosed with TM 2 years ago. I am in a wheelchair, and Im going to be in a wheelchair for the rest of my life. But dont feel sorry for me, because I dont feel sorry for me. I just signed up for this and i am really excited about it because I have only met 1 other person with TM before. He was more extreme them me because he was hit with TM when he was 2, he is a full quadraplegic on a ventilatior, but im not. It all depends on ur amune system and how ur body reacts. After the first year the doctor told me i wasnt going to walk again and I cryed and i locked myself in my room feeling sorry for myself, the best advice to someone in my situation or in ur husbands situation is that if u hear those words, and it is a very likely chance he will, dont regret it, dont fight it, and dont deny it because I waisted 6 months telling myself the doctor was wrong.

                          And in your situation as the wife, the worst thing you could do is give him false hope. Please never give up hope, but be realistic, the sooner u realize that the better off you and ur husband will be.

                          I have struggled with TM for along time, and i have not gotten worse, and medical records show that people with TM do not get worse, so if he is haveing back pain, bladder problems, or anything of the sort its not a sign of getting worse its all normal. Please write me back, Im only 16 and i would understand if u didnt feel like talking to me


                          (if this went to the wrong person, im sorry im newat this)

                          Comment


                            #14
                            My son is 9. He was diagnosed with TM in Nov. 2005. He is a T-10 complete.

                            Pam

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