"Love begins at home, and it is not
how much we do... but how much love we put in that action."

- Mother Teresa

Friday, September 7, 2012

Living with Transverse Myelitis





Transverse Myelitis (TM) is a neurological disorder caused by inflammation across one segment of the spinal cord (mine was around T8). The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflammation, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.

I was 28 years old & 6 months pregnant with my 2nd child. I woke up one morning real dizzy & off balance. The dizziness went away and then came back pain. I just thought whew, this pregnancy is crazy rough on my body. After my daughter was born I came home still with back pain, I thought it was from the spinal block from my c-section no big deal. It takes a lot to get this big girl down. I got to where my upper thighs were so sensitive that my pants would hurt them. I began to shuffle when I walked. I knew that it was time to go to the doctor. When the Dr did a MRI I knew something wasn't right because the techs started asking me lots of questions & my Dr called me back to his office while I was still in the MRI. I was told I had a tumor then MS. A spinal tap & 3 MRI's later results showed I had Transverse Myelitis. The doctors started an IV of steroids, oral steroids, & shots of steroids. I gained over 60lbs. in 3 months. But...I could walk again.  Seven years later, I am 75% recovered. My doctors gave me meds and said there is nothing we can do. There is no cure for this disorder. I still have a long list of issues:
  • Depression
  • No leg reflexes
  • Sensory dysfunction in the lower body
  • Pain
  • Bladder dysfunction
  • Numbness
  • Tingling
  • Coldness in feet
  • Binding feeling around feet
  • Sensitive to light (always wear sunglasses outside)
  • Headaches
  • Fatigue
  • Exhaustion (the more I do, the more days I have to take to recover)
  • Episodes where for about 2 days my mind feels like it's out of my body, I can't talk or walk right (like a stroke)
  • Can not climb steps
  • Did I mention the pain
With all these yucks, I have the love & support of my family & friends especially my best friend :-* my husband. I just think, God has a purpose for everything and let his will be my way. I make everyday count with my family. My body can't do the things it used to or wants but I have this amazing strength to make good memories with my children. I want to make everyday count.

21 comments:

  1. Hey read ur article felt sad that you have been diagnosed with TM like me. but i am happy to see that you are having a good life and ur family supports you. Really looking forward to read ur article more in the future!!!!!!!!!!! keep inspiring

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    1. Thanks. I did not want others to know my kryptonite :) But I knew my story had to be told.

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  2. Love the blog !!
    Keep on inspiring!

    Love ya,
    Vickie

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  3. Proud of you. love you.

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  4. Hi. I just read your blog. I do not have TM, but my disease of misfortune/fortune is ADEM...they think. Had MRI'S, blood tests, lumbar punctures,biopsies,and about 5 different diagnoses. I am left with peripheral neuropathy in my hands, arms, feet and legs. I also have no reflexes in my legs or feet.
    I have 24/7 pain that is my constant companion. I have had this condition since April, 2006 and I am 51 years old.
    It is nice to know that someone understands your struggles. I get through every day with God and the love of my family and friends.
    Thanks.

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  5. Hi. I just read your blog. I do not have TM, but my disease of misfortune/fortune is ADEM...they think. Had MRI'S, blood tests, lumbar punctures,biopsies,and about 5 different diagnoses. I am left with peripheral neuropathy in my hands, arms, feet and legs. I also have no reflexes in my legs or feet.
    I have 24/7 pain that is my constant companion. I have had this condition since April, 2006 and I am 51 years old.
    It is nice to know that someone understands your struggles. I get through every day with God and the love of my family and friends.
    Thanks.

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    Replies
    1. I'm sorry to hear of your condition. God is always good through the bad and the good. Thanks so much for sharing.

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  6. Hey I have Neuromyelitis Optica pretty much the same as what you have but my eyes are also affected. It's can get to you but the aim is to be positive at all times and enjoy all the good days and the bad days, well just let them be. I am now 6 months pregnant with my first child. It's caused all sorts of relapses similar to the list that you mentioned. I too have had the bain of having to take high doses of steroids but this has been a God send because they saved my life despite how horrible they can be. I always say that we don't get put through things in life that we can't deal with. Great blog and lovely to see. It's inspired me to write more. :-)

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    1. Thanks for sharing your story. Keep on being positive it's refreshing.

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  7. I am beyond proud of you! I alone know what it took for you to post this. You are the strongest most courageous person I know. I am always here for you and it was like living this nightmare all over again while reading this. Keep your chin up and remember the silver lining is always there. Loves ya!

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  8. Thank you for being there for me and my children. You are and for evermore will be my true friend. You are so genuine, loving and always have my back even if I might be wrong! :-)

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  9. I am just thinking now that I have this after a flu shot. My doctor didn't believe me but today I fell with weak legs back and arms. I hope for good things and being able to recover. Good luck to you...you have a wonderful outlook and I know you'll continue to do well!

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  10. I was diganosed with Tm in 2011 it totally changed my life ,over the past 2years ive learnt to walk again an try lead normal life but there are plenty days when the pain bad in my legs i just dont want to get out if bed . The biggest thing for me was accepting my body an life had changed ,my family have been wonderful in helping me ,i find it hard accepting there help .The worst part i found was feeling helpless because my sons see me differently i think i was supermum before an now they constantly worry about me .On a happier note i do see life diffently and im gratefull for family an freinds. To anyone who suffered from Tm things can get better :-) x

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  11. hello my name is Katie I also have transverse myelitis I got mine when the flu virus attacked my spine I was only 19 It felt like the flu I was nasiated room was spinning no feeling in my legs then I couldn't feel my bladder felt like I was dieing. I still have numbness in my legs bladder issues and pain but life goes on now that I have 26 and in Allentown the docters don't want to do anything about this disease or symptoms because they don't know enough about it I think it is very important to stay strong so someone somewhere can find a cure for this disease thank you for bringing recognition to this disease

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    1. Thank you Katie for sharing. It does seem that Drs do not understand or attempt to. Hang in there. I hope that one day we will find that one physician that will help. ♡

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  12. I was diagnosed with TM about 2 months ago. I wasn't parylized. I started off with pain in my back. Numbness in my fee and legs. Had really bad nerve spasms especially when i would look down or sneeze. Do you know anyone that is healed after 2 months?

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    1. Diane, I'm sorry to hear about you being diagnosed TM. I do not know many with TM but there is multiple groups on Facebook closed and opened. You can ask questions on their feed, they are very nice and knowledgeable people. Thanks for your comment. I hope your recovery is fast and @ 100%.

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  13. Diane's symptoms started like my own (18 months ago). I am a 59 year old male and this is the first time I have shared on a blog site but Jamie's story was inspiring .. thank you. At first had very sharp pain in the base of my scull and tingling in the little finger of my left hand. My MRI disclosed spots in C6 and C7 areas of my spinal cord. Within weeks of the onset, I was walking along and suddenly both legs and my stomach suffered massive tingling and pain causing temporary paralysis for minutes before I could move again (see MS hug for comparative symptoms) and then each step triggered shooting (electrical type pains up my legs (this was a recurrent TM attack). So I have been diagnosed with Recurrent Transverse Myelitis. The third recurrence caused my left arm to be spasmatic for about a minute. I been told that if a flare up occurs in the same area as previously affected this is not so serious but if TM attacks a new area in the body then this is very dangerous as it can at any time attack the motor control functions (as with most single TM attacks) or can attack the organs. I reluctantly went on a med called Rituximab as I was told the risk of a next occurrence putting me in a wheel chair was very real (Rituximab is a chemo IV that is experimental 10 yrs now with MS and RTM patients). I get 2 IV's every 6 moths of Rituximab.
    In the beginning I also had 'Lhermite's sign' (very common for MS also} in that dropping the chin to the chest triggers immediate tingling/pain in the stomach, legs and feet!
    My toes, feet and legs suffer pain, coldness, tingling, numbness etc just as Jamie described and also fatigue, irritation, stress and depression are active but I have had no other area in by body attacked since I went on the Rituximab. I am not convinced the rituximab can be credited yet with no further occurrence as I was on heavy steroids (IV's) prior to Rituximab and only 1 year has passed so far.
    I have been told the activity in my toes and feet are residual damage from multiple flare ups in the first 6 months.
    I am a high functioning exec that has resisted the neuro pain killers (until now) but have started with Gabapentin for the pain (FYI pregabalin caused massive muscle pain for me so that's out) and tingling and I need to change my life and work and STRESS to start living with this disease (apparently not curable). Not life threatening but quality of life threats and risk is very real for me.
    The answer is supposedly to be positive and live stress free.. easier said than done sometimes :-)
    Good luck to you all on the road ahead and hope the road rises to meet you, the wind be always at your back, the sun shine warm on your face, and God hold you in the hollow of his hands.

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