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Thread: Please anybody with TM that can help me!!

  1. #1

    Question Please anybody with TM that can help me!!

    Hey Everybody,
    I'm new to this site so excuse me if I've put this in the wrong spot. I have had Transverse Myelitis since March 2004. I went to work on a tuesday and my feet were burning. I figured I was just tired. By that night I could hardly lift my legs to walk. The next morning I was paralyzed from the waist down. After a string of tests they determined it was TM. I had not been sick or anything before hand so it was called 'idiopathic Transverse Myelitis'. I was released from the hospital after six days (by a doctor I had never seen before) so needless to say the hospital was calling wanting to know why I was home when they had a bed in the rehab unit waiting!! Since I was released my insurance would not provide coverage for me to go back. Over months I worked at it day after day till I began to walk again. After that I was sent to rehab (not in the hospital) to help me get some strength. Today I walk but have severe weakness. Even though I live in 'doctorville' there is nobody here that knows anything about TM. To get to the point....I'm begging anybody to please give me some suggestions for pain. I have a very high pain threshold but as time progresses the pain gets worst, my legs get weaker and my doctor seems to have the 'learn to deal with it attitude'. I feel like I have taken everything under the sun since it started. Now my doctor prefers I spend most of my time in the bed. I'm 46 and I'm not asking to run marathons but I would like a decent quality of life. I'm not even asking for anything to completely stop the pain because I know thats impossible. It's hard for anybody to understand what it's like to deal with pain 24/7 on every inch of my body from my middle back down to my toes. If I wasn't living it, I would think it sounded nuts. I'm a member of the TM Assoc. and respect everything they do but their 'phone book' of members to contact for support has proven to be useless. I have wrote to at least 100 members but nobody will write back! A friend suggested I come here. Though I take pain killers at this time they do much of nothing. I think that over time the body can become immune to meds, but apparently my doctor doesn't agree with me. I have days where I can deal and other days where I just want to die I'm hurting so bad. Any vibration (somebody walking hard, me talking etc) I can feel in my back. I just want to cry. I have 8 grandchildren I want to enjoy. Two of them are just babies! Will somebody please give me some advice, or ideas, of some meds that helps them deal with severe pain that I could print off and take with me to my doctor. Maybe he would be willing to let me try them. After depleting our retirement fund we are not in the position for me to see more doctors. Our budget is very tight. I have seen doctor after doctor and since nobody knows what to do with me, they just send me on my way. I'm dealing with the constant bladder and kidney infections, having to use enemas and shots to poop (please excuse that part...I didn't know how else to put it), weakness, being exhausted all the time, but PLEASE will somebody help me with this pain? Though I would never do it (only our Lord has the right) I feel like I just want to kill myself when my body decides to spike out of control. Riding in a car with the vibration is keeping me home most of the time now. My family does their best to be supportive but unless you have this, it's impossible for anybody else understand this level of pain. I'm only 46 but I feel like a 90 year old having to lay around all the time. I know I should be grateful for just having the ability to walk when so many do not. And I am grateful and mighty blessed. I keep everybody with diseases in my prayers that everyone will receive a miracle someday. I guess I have said what I came here to say. I appreciate you letting me post here.
    God Bless You All,
    Mary

  2. #2
    Senior Member lynnifer's Avatar
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    Fatigue and Transverse Myelitis go hand in hand.

    As for the pain, I have Transverse Myelitis myself. I was afflicted when I was 12 - 25yrs ago - but I was left paralyzed from the waist down. It seems those who are paralyzed seemed to be spared some pain .. but if you get any return, as you did, there seems to be mega pain. Also, those hit as children seem to be spared the pain, but not adults.

    I'm not sure how to advise you on that since I have no experience there, but you might want to try contacting the Johns Hopkins Transverse Myelitis Centre in Baltimore.

    http://www.hopkinsmedicine.org/neuro...elitis_tm.html

    I know I've contacted them years ago about some issues that I was having and a nurse replied with some advice. Good place to start anyway?
    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. #3
    I wish I had advice. Had TM when I was 11, nearly 40 years ago.

    I'm walking with crutches and have pain but not the type you are experiencing.

    I second Lynnifer's recommendation to contact Hopkins as they are the only place I know of that specializes in TM.

    Wishing you the best and that you get some relief.
    Adaptive Sports Forums.com
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  4. #4
    I did go there but I couldn't find where to send an email to anybody. I do appreciate the advice though.

  5. #5

    Thank you..

    Thank you My395. Once I can get this severe pain under control I'll be a much happier person. I'll manage.

  6. #6
    Quote Originally Posted by m1964c View Post
    I did go there but I couldn't find where to send an email to anybody. I do appreciate the advice though.
    It's not an email address, but the phone number is 410-502-7099.

    There are also phone numbers and snail mail addresses for the TM center team members at http://www.hopkinsmedicine.org/neuro...myelitis/team/

  7. #7

    Thank You

    That you Katja. I will see what they can tell me. I think these smiley faces on here are adorable!

  8. #8
    Hi Mary,
    Your post touched my heart and I'm so sorry that you have this pain. I have a similar situation so I understand what you are going through. A year and a half ago, I started having numbness in my left wrist and within days, it spread up my arm and to my torso. My family Dr had enough savy to order a brain CT scan and then an MRI, which revealed abnormalities in my brainstem and spine. He sent me to a Neurologist who ran a battery of tests but was too conservative about giving me treatment. 6 weeks from the start of symptoms, I deteriorated so much, I landed in the hospital. A different set of Neuros diagnosed ADEM (which is a disease/disorder related to TM) and they treated me appropriately with heavy steroids via IV. I'm 61 and ADEM is much more common in children (although rare) and is thought to result from a virus crossing the blood-brain barrier. I took oral prednisone for a year. My Neuros were happy because my spinal cord, which was very swollen in the C & T sections, went back to normal and a long string of lesions healed almost completely.
    But! I, like you, was left with severe neuropathic pain and it has not improved at all. I have this on my entire left half from armpit level down - arm, hand, front and back torso, leg, and foot. My Neuros say I have a 2 year window to heal and after this probably won't see much change, and that's only another 6 months. They have given me Neurontin to help the pain and it does take the edge off of it. I have developed a tolerance to it, so have had to have the dosage adjusted and probably will again soon. Once I get to the maximum dosage, I don't know what they'll do. There are some side effects, like fatigue, drowsiness, and memory lapses, but these aren't as bad as some meds.
    In spite of being careful, I do have some flareups. Here's what I do:
    - Be careful about taking meds on time because the Neurontin wears off suddenly. (It also takes effect quite fast, which is good.) Work with your Dr to ensure you are taking the appropriate dosage & using the correct schedule.
    - If you are unusually active, the meds may wear off sooner than usual.
    - Get plenty of rest and aim for consistent hours.
    - Eat a very healthy diet. No junk food, limit the sugar. Eat raisin bran or oatmeal for breakfast. Eat fruits and veggies. I don't drink any soda-pop (luckily, I hate the stuff!)
    - I take one or two fish oil capsules a day, after meals. I've also taken Vitamin B12 pills daily for a month so far in hopes it will help the fatigue.
    - Learn and know your limitations. Plan around them & don't push it!
    - I got a recumbent bike and try to ride it every day for at least 15 minutes. I had to start out very slowly on this, but it helped my leg muscle and flexibility.
    - I found that heat, especially moist heat, helps the pain in my arm and torso (my two worst places). There are microwavable heating pads that really help me.
    - I take warm baths with Epsom salts and this seems to soothe the pain also.
    - Try and find a good neurologist who will listen to your specific problems. I always go prepared with a summary sheet (not too long) with my name, diagnosis, last appointmanet date, my symptoms, any changes, and a list of questions I have. If it's a new Dr, get your medical records (test, results, and Drs notes), keep a copy and make a copy for the new Dr.
    - Check out any clinical studies in your area for TM. I am participating in the Accelerated Cure Project which aims to create a central data repository for MS & related disorders in hopes to hasten a cure. Their web site is: http://www.acceleratedcure.org/repository/

    Much of what you are experiencing is very typical for neuropathic pain. I don't have all the answers and get blue myself about my issues, but the more I research and read about it, the more I learn and realize that I'm not alone. Good Luck to you!

  9. #9
    Mary, I just thought of one more thing that helps me and might help you. If you can get ahold of a down comforter or even a down lap blanket, you can try using this to sit or sleep on when in pain. If you fold it and sit on it, it might even help reduce the vibration when riding in a car.

    When I have a lot of pain, I roll myslf up in it and it really helps.

    I find that exercise is important and it helps, but you have to be sure to build up to it gently. Staying in bed all the time won't help. Of course, when you have a flare-up, then that's the time to go to bed!

  10. #10
    Mary,
    Prayers to you. I have TM since 2007 with spinal bifida. My pain is from the waist down. Some good ideas from KYLady. Especially caffine and sugar issues. I also take neurontin and will up my dosage soon. WWW.neurupathy,org has good info on pain. They also have a big summit this week. I took antidepresants for a time and they also mitigated the pain. Get a good neurologist, consider other meds Lyrica etc.

    I swim using my upper body for stress relief both physical and mental.
    Wish you the best. Tom

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