TM: Condensed Version
In September of 1995, during my morning routine I noticed that my left hand felt a little funny, like I had slept on it wrong. Within a few hours, that whole arm was numb and not functioning correctly, my legs and lower torso were numb, I couldn’t walk on my own, and I was having trouble using the restroom. By the next day my energy level was almost nil, and I broke out into a sweat after a very short while of any exertion and had to crawl back into bed. I was in the hospital for 8 days while all kinds of tests and procedures were done and long lists of possible causes were considered. The final diagnosis was transverse myelitis.
Transverse Myelitis? What? What is that? Who has ever heard of it?
It is either a virus or an auto-immune response to some stimulus which causes demyelination , or damage to the myelin sheath around nerves in the spine. What symptoms one has depends on where along the spine the damage occurred: the higher the attack, the worse the symptoms.
Over the next three months I progressed from a walker to a cane to walking alone, though wobbly. My balance has been greatly affected. For a long time I had much more trouble with balance standing still than walking. Sometimes I just feel generally unsteady. My knees and ankles sometimes “go out.” The fatigue lessened greatly but is still a factor. The numbness has subsided a good deal, but is still there and flares up from time to time. I have pain right between my shoulder blades that flares up from time to time, like a muscle cramp with a vengeance. The pain in my arm also flares up from time to time. My right leg does not feel cold or pain. I still have assorted bathroom problems –that has probably been the most frustrating for me. I have odd little muscle twinges and twitches or tremblings. That used to just about drive me crazy: the way my neurologist put it was that my nervous system was affected, making it more responsive to stimuli. So whereas beforehand, I had a little twitch in my eyelid sometimes, now something like a sneeze can set off a shower of twitches all around my eye. Stress, illness, not getting enough rest can all trigger a flare-up, but sometimes symptoms flare up greatly for no apparent reason at all.
For more detailed information, see Onset.
The most important aspect of all of this is not what happened physically, but how God worked in and through it to draw me closer to Himself. Some of that is at the end of the “Onset” post; the rest of it divided up into shorter posts: Fear, God’s Help, and Unanswered prayers and reasons for suffering.

























25 Comments
September 3, 2006 at 12:21 am
Barbara, may God always bless you and keep you safe. My mother has been diagnosed with Peripheral Neuroprathy and Fibromyalga and some of the symptoms you described are similar to hers. Now I have trouble with numbness as well, although I really think I just have tendinitus everywhere! I sleep with braces on my hands at night so that they aren’t cramped and numb all day long. Sometimes though it doesn’t matter and it just flares up. I have problems in my elbows, knees and the tendons in my feet as well. I feel for you and I admire your courage and honesty.
August 18, 2009 at 10:48 am
God brought me to this site. I was diagnosed with TM in 06. I went back t work in 07 part time on a walker with a seat. I was fine, I work up in May 06 and my left foot felt strange. By the time i drove to work and turned off the car, I was paralized from the waist down. It happened that quick. I have worked for a health care insurer for over 21 years. My doctors didn;’t know if i would ever walk again. I was afraid and ashamed. I didn’t want anyone to see me like this. It has taken me 3 long years to be able to wlak with a cane. God has blessed me to return to work and to show people that he is alive. However, I didn’t get the welcome I thought I would when I returned to work. Peopel stared at me -”is that Paule?’ What happened to her? I have been blamed in having accidents in that bathroom that I never had because I have TM. Everytime I use the restroom i have to call Occupational health or employee Relations so they can call housekeeping to clean behind me before anyone cane use the restroom after me. I feel as though I have a contagious disease even though I know TM isn’t. I didn’t ask for TM. However, everyday I walk into my job, God has the victory. Their treatment of me they don’t know what they are doing-i am a child of God-this is his fight not mine. Pray for me that God will continue to give me the strength to continue my walk with him everyday as i continue my employment. I don’t know why???I only know how to continue whatever the road God gives me to travel.
August 26, 2009 at 9:38 pm
Hi, Paula,
I’m so glad you found the site! Though sorry you have TM.
If you haven’t yet, check out the TM resources here. There are dozens of other TMers at the TMIC and TM Message boards listed there. It’s so helpful to talk to others in the same boat.
I’ll be praying for you!
January 23, 2007 at 5:29 pm
THANK YOU FOR YOUR TESTIMONY. IF FOUND YOU ON THE TRANSVERSE MYELITIS EMAIL CHAT. I AM A CHRISITAN AND WAS DIAGNOSED WITH TM IN MARCH OF 06. THANK YOU FOR THIS ENCOURAGEMENT I NEEDED I AM AT A TIME OF DISCOURAGEMENT I AM A MOTHER OF FOUR AND CAN’T SEEM TO GET RELIEF FROM TM.
THANKS MARTI
May 10, 2007 at 5:39 pm
Sister!
It seems you are not only my sister-in-Christ but my sister in TM as well. I was diagnosed in January, 2007.
Thank you for posting your story.
I am trying to determine how to best deal with this but I must testufy that, while I didn’t know I was going to get TM, God did and he carved out so many caring hearts for me and my family that I am completely blown away by how much He love me. Go figure…
Your brother, in more ways than one…
Mike Nelson
November 2, 2007 at 1:19 pm
Barbara,
My name is Erin O’Neill and I was recently diagnosed with TM. I was two weeks away from entering my first year of college and for a long time I didnt understand why something like this had to happen to me. If I had to ability to change what happened I wouldn’t because TM has changed my life and I have learned so many life lessons through it. It was so awesome reading what you had to say about it. Thanks
Erin
February 3, 2008 at 5:23 pm
my name is shannon and i was diagnosed on jan13 08 with tm. i am a devoted christian woman who has always had faith. i don’t douubt it now, i just get mad this happened to me. i see gods love around me with all the love, support, prayers, and good wishes. please pray for me that i recover usage in my left hand. i don’t have children yet and i pray god will allow me the opportunity to raise a christian child…
February 5, 2008 at 9:33 am
[...] Transverse Myelitis [...]
March 22, 2008 at 8:30 am
Thanks for your testimony -and the courage to speak from the heart.
Praying for you – and everyone afflicted with TM.
May 17, 2008 at 2:35 pm
Ive got it to
May 19, 2008 at 10:04 am
[...] Transverse Myelitis [...]
July 21, 2008 at 12:18 pm
[...] Transverse Myelitis [...]
July 22, 2008 at 11:48 am
[...] Transverse Myelitis [...]
September 25, 2008 at 2:28 pm
Wow, I just came across this by God’s povidence. I was reading your book review of, “Home to Holly Springs”, and saw that you had TM. I was diagnosed in 2004.
I still have some tremors and balance issues and head pain, but God has been so faithful to me throughout it all.
I couldn’t walk, read, or watch TV, all I could do was lay in bed and pray. What a wonderful time it was with our Lord. Many friends, family, and health care people came across my path and I was able to share God’s faithfulness with them and ask for their prayer requests. I had pages of names and requests. What a joy it was.
I am reminded that “All things work together for good to those who love God and are called according to His Purposes”.
May God bless you as you share your testimony with others.
Marla Shelton
October 12, 2008 at 8:56 pm
Hello, Marla,
Thanks so much for stopping by and for letting me hear from you!
TM is one of many things no one would choose, but the Lord has certainly used it and taught me many things through it. I am glad to hear He has done the same for you!
Barbara
November 24, 2008 at 10:57 pm
Hi, Barbara. I’m at your blog to see your Blue Monday post and saw the link for TM. I know someone who got it when he was 12 and I really didn’t know too much about it until earlier this year after I spoke to his mom at lunch and then googled it. We were kids when he was diagnosed and I remember being told he had a virus and it left him unable to walk. He walks now, (over 30 yrs later), though a little shaky and seems to be doing fine. His mom told me he even goes sky diving — something you couldn’t get me to do even if you paid me.
I’m going to go back and read some more on it. Thanks so much for sharing your story. I’m sure you have helped many people by doing that. I have diabetes and I know it’s always good to talk to others who have it too. Happy Thanksgiving!
March 18, 2009 at 9:33 pm
Found this post through a Google search. I am a recent potential TM or MS sufferer of about 6 months. I did not know that bit about “the higher the attack, the worse the symptoms.” At any rate, best wishes to you and all the rest who come across your blog.
April 10, 2009 at 12:29 pm
Hi, Cliff,
If your searches haven’t yet led you to these sites, there are some great resources listed here.
April 20, 2009 at 9:21 am
[...] Transverse Myelitis Look, Ye Saints [...]
May 16, 2009 at 6:12 pm
hi, everyone my name is christian jones an i am 14 yrs old i was also a victim of tm,i was diagnosed when i was 12yrs old, okay iwill began by sayin dat when it all happen i was very confused i had no clue wat to do i felt all alone no one believed me my family thought i was just trying to stay home one school morning, but my brother dat im very close to seen it in my eyes dat i was serious,an helped me convince my family dat i wasnt joking around, so finally i got to the emergency room an just so happenly the emergency room was packed with patients, i got seen alright but never got treatment that so it got worser over night cause my family took me home so we tried again the next day an was immited on spot. my experience was very scary writin about it tare me apart so i have to go now bye…..
May 16, 2009 at 6:28 pm
okay im back its weird cause in everybodyelses eyes im normal but nobody know my problems nobody know what i go threw i can walk talk ,an see just fine but i still have a limp to my walk an others always ask me why in limping an i jus brush the question off wit a laugh or say my leg hurt a little.but what alot of others dont know about me is that i have non type of dependable movement in my left hand. i went threw therapy an all but it help me only so much, but every since i was i released from the hospital and my therapy sessions an didnt accomplish all my goals, i knew from that day that i could never be the same me that i was once before, my whole mind set changed after td came in affect in my life i became very positive in a way so i must say.
July 6, 2009 at 8:43 am
[...] Transverse Myelitis Happy 4th and catching up [...]
July 25, 2009 at 3:19 pm
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October 14, 2009 at 9:49 am
[...] Transverse Myelitis A Thousand Words In Idioms: The Rainy Version [...]
November 17, 2009 at 1:30 pm
dear barbara,
i am 27 yr old guy from kolkata(calcutta) india. i was diagonised wth TM in 2003. i am a member of TMA. i have volunteered to become the TM support group leader for india.
u can read my article in the newsletter section of myelitis.org. in the heading-INDIA Support Group.
http://myelitis.org/newsletters/v8n1/newsletter8-1-toc.htm
hav a great day!
abhijit