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.
This page has the following sub pages.





















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.
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.
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!
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
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
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
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…
[...] Transverse Myelitis [...]
Thanks for your testimony -and the courage to speak from the heart.
Praying for you – and everyone afflicted with TM.
Ive got it to
[...] Transverse Myelitis [...]
[...] Transverse Myelitis [...]
[...] Transverse Myelitis [...]
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
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
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!
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.
Hi, Cliff,
If your searches haven’t yet led you to these sites, there are some great resources listed here.
[...] Transverse Myelitis Look, Ye Saints [...]
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…..
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.
[...] Transverse Myelitis Happy 4th and catching up [...]
[...] Transverse Myelitis The Deity of Christ Fathers and sons, good and bad [...]
[...] Transverse Myelitis A Thousand Words In Idioms: The Rainy Version [...]
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
Barbara,
I just had a friend diagnosed this week! Is it a coincidence that I should happen upon your blog and then this post? Not in the life of a Christian! I will know better how to pray for him and you too! Thanks for sharing. I will read more about your experience in the days to come. Blessings.
That is amazing! I have a list of TM Resources here — feel free to refer him to them. They were a big help to me. I didn’t have a computer when I was first diagnosed, and found little information in the library. These were lifeline to me.
[...] Transverse Myelitis Friday’s Fave Five [...]
[...] Transverse Myelitis Posted by: Barbara H. | September 1, 2010 [...]
Hi, my name is Carlos I’m 20 years old and I had TM when I was 9. When this happened to me it was something that can not be explained unless u lived it. I remember waking up for school and not Being able to walk feeling pain in legs. My family at first did not believe me once they saw that I wasn’t playing they took me to the hospital were I spend 2 and a half months at first I dint think much of it maybe because I was so young bug if I would of known what I know now I think that I would probably done things differently. Even tough it has Been so long I still haven’t gotten use to it and now I walk with a limp I don’t walk like before but is something and I have come to ubderstand that life is what we make of it so smile big and always look for a new tomorrow
Iam thank full for my family that they’ve been trought it with me and with out them I wount have known what to do. Happy holidays to all of you out there and good luck and remember God never forgets you.
I am glad you are doing so well, Carlos! Thanks for stopping by. If you haven’t yet you should check out the Transverse Myelitis Internet Club (http://www.myelitis.org/tmic/) or message board (http://www.myelitis.org/forum/) to connect with other TMers.
[...] Transverse Myelitis [...]
Though I feel for you, god had nothing to do with this. I know it is a source of comfort for many of you but this is just a physiological abnormality that though scary and painful is only a lesson related to spirituality if you wish to make it so. The real lesson you should take from this is that you are a strong person (on your own) and did not need help or comfort of a god (sic) but the use of modern medicine and health care.
I am not being insensitive to your condition, I was diagnosed with TM two years ago after weeks of no help and near paralysis. Since I have changed my course of studies to include neuroscience and might go to medical school to help those less fortunate. I don’t say this to bash on your faith but to tell you that you are misplacing your source of power and resolve.
It takes a lot of arrogance to go on someone’s personal blog and attempt to discount their experience and to declare that you, one man in the universe, can authoritatively say God has not helped a person. Yes, you are “bashing my faith” and I don’t appreciate it.
If you choose not to believe in Him, that’s up to you, but allow others the same freedom of choice.
Barbara,
I agree with you. I was diagnosed in 2005 and the Lord healed me. I had faith that if I didn’t give up trying he would put me on the path to the doctors that could help me. God is extrodinary. It is now 2012 and I can go outside and do a cartwheel if I really wanted to…and I’m 44 yrs old so it’s not that easy to begin with!
May the Lord bless you for creating this blog. I admire you for using your gift.
Carrie B.
My Michael, at age 57 was diagnosed with TM. It was the wrong diagnosis. TM is nothing more than a catchall diagnosis for sudden paralysis with unknown cause. However, the causes range from Guillen Barr, MS, among others.
In Michael’s case, he really had an arteriovenous malformation dural fistula on the C-Spine. MRI, Arteriogram is used to detect this, if doctors will do it, and follow through with what they suspect or see. I Michael’s case, they ignored it and never told us.
Michael died on April 30, 2010. His wrong diagnosis left him a quadriplegic, and on life support from a paralyzed diaphragm later, from 2007-2010
There is a TM expert, Douglas Kerr or Kern at John Hopkins in Baltimore, MD.
Transverse Myelitis Association can be found on information.
I am so sorry for your loss and for Michael’s wrong diagnosis.
I have a link for the Transverse Myelitis Association under TM Resources.
I’ve been a member of the Transverse Myelitis Association and the Transverse Myelitis Internet Club for about 14 years, and with that background I think I can safely say that TM is MUCH more that a catch-all diagnosis. The article “Transverse Myelitis: Symptoms, Causes, and Diagnosis.” has a lot helpful information.
Hi Barb:
After being ignored, and Michael was paralyzed, he was diagnosed with TM, even though another diagnosis was suspected, and ignored again. Michael had an arteriovenous malformation dural fistula on the C-Spine.
Everything could have been prevented, if doctors would have done their job.
You are welcome to post your story on one of the pages. I think there is one titled personal stories. All you do is go to where the pencil is, click on that and it will say edit, then just write.
You can provide resources for information, whatever you have to offer. I am trying to educate, as well as help others find resources to help them get what they need, to solve problems etc.
Dear Barbara
I like you comments on Sharper Iron. They have helped me. However, I did not know how to make contact with you. Diane Haney told me about your blog here.
thanks
dianne barrouk
Hello, Dianne, Nice to meet you!
I really appreciate your positive outlook and information. I’m having problems with my right leg at the moment. The ER doctors only called it myelitis. They stuck me on a walker and told me to see my GP pronto (who’s on vacation til next week).
A couple of years ago a neurologist suspected MS. I’m a little nervous about the upcoming appointments with doctors. Your site made me feel better. For that, I thank you.
If it were me I’d get in to see someone asap — does your GP have someone covering for him?
One thing about both TM and MS I’ve discovered is that, as awful and scary as the diagnosis is, life does go on and people have fruitful, useful, and enjoyable lives even when dealing with conditions they could not imagine before. I hope they find the trouble and that it’s not serious, but I wish you all the best in whatever it turns out to be.
[...] Transverse Myelitis [...]
GoodMorning,
My name is cheri, in 09 i had a horrible virus,fever,vomiting,the whole gamit,i called my g,p,and was told a stomach bug was going around to do the BRAT diet,for a week i did this,until one night i feel into a very deep sleep,my family told me i slept for 12hrs,thats never me. i woke up,to no feeling of my left foot all the way up to my buttocks. My husband took me to the e.r i also had foot drop,they thought i fell,i kept telling them over and over no i woke up like this, 11 er visits and endless visites to my g,p,he finally 3 months later puts me in the hospital,i was in almost a month,they released me on a cocktail of meds, to make matters worse, three weeks after my release from the hospital,my husband died in his sleep at the sge of 40.my daughter had to cancel her wedding loosing hundreds of dollers in deposits. i changed g.p. right away and found a great woman dr. she knew right off the start i had t.m, its now almost 2 years latter, i’m no better,i’m having trouble now with my bowels and hands.and my daughter has rescheudled her wedding. i was told if i was diagnosed right away,i could have plasma transfer? and maybe had a better out come.i belong to the TMA,and get newsletters, i’m 47 and wondering,what am i gonna do with the rest of my life now? i cannot work or drive, it looks like the disease may also be in my right eye. i keep my head up high,and keep busy doing crafts i can manage,writing.i want to get the dragon program so bad, you just speak and it types. all of you are in my prayers and i wish all of you the very best and may our lord bless each and everyone of you
with love
cheri
Wow, your story is so similar to mine. But, I just fell to my knees while I was standing up, I fell to the floor and when I tried to get up I realized I couldn’t feel my legs from waste down. As I think back my hands were numb and i was concerned. When I picked things up I couldn’t let them go. Unfortunately TM affected my arms and legs. I lost feeling in my arms from the elbow down. I was in the hospital for almost a month, first at a hospital and then to the rehabilitation hospital. This is all pretty recent for me. I start outpatient therapy for four weeks starting next week, aquatics included (which I LOVE). I will go 3x a week for 3 hours each time and I hope to be off the walker soon. They say I will make a full recovery in 6 months to 2 years if I don’t relapse. My question to you is do you have twitching anywhere but around your eyes. I seem to twitch a lot but again this is all new…..it’s mostly in my arms and hands. My legs just seem to feel like someone is kicking me in the back of my knees and my reflexes spaz out….anyone is welcome to comment. Thank you all
[...] Transverse Myelitis [...]
[...] Transverse Myelitis [...]
[...] Transverse Myelitis [...]
[...] Transverse Myelitis [...]
If you’ve ever had muscle spasms or muscle cramps, you know they can be extremely painful. In some cases, a muscle may spasm so forcefully that it results in a bruise on the skin. Most muscle spasms and cramps are involuntary contractions of a muscle. A serious muscle spasm doesn’t release on its own and requires manual stretching to help relax and lengthen the shortened muscle. Spasms and cramps can be mild or extremely painful. While they can happen to any skeletal muscle, they are most common in the legs and feet and muscles that cross two joints (the calf muscle, for example). :
Remember to pay a visit to our own blog
<.http://www.foodsupplementcenter.com/bilberry-tea/