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Thread: Reoccuring TM Symptoms What does it all mean?

  1. #1

    Angry Reoccuring TM Symptoms What does it all mean?

    Hi!
    My name is Vanessa, I am 27 years old, and I had Idiopathic Acute Transverse Myelitis when I was nineteen. It came on fairly suddenly, within a few days. I was in the hospital for about 2 weeks enduring the hell of tingling, numbness, pin prick feelings, pain, loss of strength, I could barely walk. Eye blurriness, loss of coordination, couldn't pee, along with many other hellish symptoms. Through many spinal taps, tests, steroids and doctors they got the inflammation in my neck to go down. I went home, and within 3 months or so I was feeling much better and could walk normally again, although the numbness and nerve damage in my left leg was still there. (Couldn't tell difference from hot and cold in that leg) Things got progressively better (Although I might add that before TM my eyesight was PERFECT, after TM I needed glasses BADLY) Anyway... things were getting better except for the exception of when I had my period, symptoms of TM would come back. Weak legs, achy arms, disabling migraines, and tingles. It was strange that it only happened during my period but I learned to semi-live with it.

    When I was about 21 during a very stressful time in my life... The same symptoms and feelings that I felt when TM had FIRST set in, was happening again. The pain was almost worse the second time around. Everything felt the same as before, numbness, weakness, blurriness, couldn't pee, and could not walk again. (Etc etc etc on symptoms)
    I was in the hospital for a week and a half doing tests an they could not find a single thing wrong with me through all the mri's testings spinal taps (AGAIN) I was thinking to myself... they have to be wrong about this, this is PHYSICALLY happening to me! Yet a second time! I saw neurologist after neurologist until I met one who didn't have the same cookie cutter response of.. "We cannot detect anything wrong with you"
    His diagnosis was the only plausible answer I could accept. It was psychosematic (In other words, it was stress overload, and this was my body's way of handling it) Reverting back to the *damaged* part of my body, my body was attacking itself.

    Over the next few weeks I had some destress time, and eventually the symptoms faded away. And I was told the first time TM struck me that it very rarely every strikes again. Shows how little doctors truly know!

    On with the story! I am prone to my immune system attacking me.
    I have quite a lot of food allergies which cause awful hives, migraines and achiness, and pressure urticaria (pressure hives)
    To best describe that... Say I whacked my knee on a piece of furniture. Within a few hours it gets blotchy and swells up twice it's size, gets very very hot, and I have excruciating pain in that knee. My immune system seems to overreact to the hit to the knee... sending way too many histamines to my knee, swelling it up and becoming a HUMONGOUS painful hive.
    This is truly not a fun experience. Usually lasting anywhere from 8 hours to up to 7 days. The only thing that only slightly helps is ice. Benedryl slightly takes the itchies away but not the swelling or pain. This is debilitating and annoying.
    Sometimes I can get a minor injury and it will be fine, but sometimes my immune system blows it way out of proportion!
    I'm wearing sweatpants with elastic? Low and behold a few hours later my midsection is covered in hives.
    I go hiking because it's a beautiful day, my feet are swollen to the point where they don't even look like feet!
    It truly pisses me off!

    My food allergies are easier to avoid, and just get general hives allover as well as a fever if I eat something I'm not supposed to. It's harder to avoid everyday stuff that *may* injure you. I'm a dog groomer, and I use my hands a lot EVERYDAY. There have been instances where I use scissors too much and at the end of the day when I come home, I can't even begin to close my hand into a fist due to the pressure hives *Brewing* and have to sit on the couch with my hands in buckets of ice water. (Also annoying) Nevertheless this is an immune system gone bonkers! I've got stuff I want to do in my life! I don't want to NOT live my life because there's a chance my immune system will git me again. Strange things happen everyday.

    And yes of course, there is no true treatment of food allergies, pressure hives, or reocurring tm symptoms. Just my luck eh?
    All the *Idiopathic* health issues have to happen to me >
    I'm no doctor but I can put two and two together and see that I have an autoimmune problem. My body is constantly attacking itself. I don't understand why doctors can't see the link between everything. To me it's easy to see that everything is connected, and not individual problems. Why can't doctors with all their technology and schooling, figure this out?

    On with the story! (Sorry I"m long-winded)
    Anyway! TM symptoms since age 21 to now (27) have lessened more and more, to the point where my left leg is almost normal and I can slightly feel hot and cold again. During my period TM symptoms are barely there. Until lately........

    During the past month or so I've noticed strange electric shock feelings and twitches in random places, like the side of my
    arm, a certain spot on my shoulder, the inner side of my knee. I brushed it off, as strange things do sometimes happen.
    Then within the past week or two I started feeling electric tingles going down my legs all the way to my feet. Sometimes in my fingers. Last weekend I was walking around at a state park by the river and realized the more I walked, the tinglier and number my legs and feet were feeling. I actually started to get a bit dizzy and had to leave. Just the other day on my way to work in the morning, I tilted my head down to look for something in my truck, and a wave of electricity shot through both my legs (mainly my left) This has been happening for about five days now. Hasn't gotten better, and has slightly gotten worse.

    Now when I had TM the inflammation was in my neck. Coincidence?
    Do I just have tight back muscles that need to be worked out? Or are TM symptoms coming back? =(
    At the time when I was 19, I was on my dad's insurance which covered my VERY EXPENSIVE hospital visits, meds, xrays, mri's etc etc etc. Now on my own and with no insurance, I can't even afford to go see a doc to get meds for a sinus infection.

    It sucks to be poor and have unexplainable illnesses.
    Any commenters? Anyone with autoimmune issues? Reoccurrances of TM?
    ANY input is appreciated! Thanks!

  2. #2
    Hi Vanessa. The symptom picture you describe sounds more like MS than TM, especially in view of the optic neuritis you had as part of your first attack (along with the pattern of recurrence you've experienced, which is not typical of TM). But neurologists don't seem to have a good handle on how to differentiate the two conditions. Most people with demyelinating disorders go for years without a diagnosis, and even when we think we finally have one, there's are still plenty of unanswered questions. The bottom line is that not much can be done about any of those conditions, so one muddles through! This forum is a godsend when it comes to information and support - welcome and best wishes.

  3. #3
    Sigh... I figured there was probably nothing I could do.
    Thanks for the reply!

  4. #4
    Quote Originally Posted by AliceisAlive View Post
    Sigh... I figured there was probably nothing I could do.
    I wouldn't say there's nothing you can do - for example, in the case of relapsing-remitting MS, there are drugs that have been statistically shown to lessen the incidence of recurrence; but first, one has to have a definite MS diagnosis, as the meds don't seem to work for other conditions. With TM and other demyelinating conditions, symptoms can be treated. It's just that there is no known way to stop these diseases in their tracks, once and for all. It's maddening!

  5. #5
    Super Moderator Sue Pendleton's Avatar
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    I tednd to agree with Bonnette that your history sounds more like MS than recurring TM. Have you had a MRI of the brain each time you've had a flare up also? Spinal taps don't tell the entire picture just a good portion of it. Are you near any of the UC connected hospitals that has an MS Center? Doctors in MS Centers know more about both MOS and the other rarer autoimmune diseases that mimic it and TM.
    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.

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