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.
Transverse Myelitis Resources:
The very first search I did after we got a computer and Internet service was “Transverse Myelitis.” I had “met” TM a year or two before and tried to research it, but all I could find in our local library was a two-page spread in a medical book. I was thrilled to discover the Transverse Myelitis Internet Club, a subscriber list where everyone who subscribes gets the e-mail everyone else sends to the list. What a relief it was to have someone to ask questions of and compare notes with, people who understood what I was feeling and what I meant when describing certain symptoms! I’ve made a great any friends there and even met a couple of them in person. It has been a wonderful support system for me and for many.
From there I found a few other sites and sources and articles that I thought I would highlight here. Click on the bolded words to go to the sites. Note: a listing here does not imply complete endorsement of everything on the site.
The Transverse Myelitis Internet Club: the e-mail subscriber list of TM patients and caregivers is no longer active, but archived searchable posts are at this location.
Transverse Myelitis Folks, a Facebook group for those with TM and their families and caregivers.
The Transverse Myelitis Association: (renamed the Siegel Rare Neuroimmune Association or SRNA), the only one of its kind. Membership and the online information and resources are free. Past newsletters are available in PDF format here. “Transverse Myelitis: Symptoms, Causes, and Diagnosis.” has been renamed “What Is TM?” with options to click in the sidebar.
The Transverse Myelitis Center at Johns Hopkins
disABILITY Information and Resources
Jim Lubin, one of my heroes, began and maintains many of the sites listed above and many others as well.
iGive.com: shop online through iGive an a portion of the sale goes to the charity of your choice. If you do not currently support a charity, may I suggest the Transverse Myelitis Association.
Though many of these sites advocate stem cell research as a cure for TM, I cannot support the use of embryonic stem cells because I believe life begins at conception. Jim Lubin has articulated well my feelings on this in a stem cells discussion on the TMIC and perhaps his words carry a bit more weight because he is more severely affected, paralyzed from the neck down and ventilator-dependent. Though we come from different theological viewpoints, our views are the same on this issue. Two parts of his comments are here and here. I have heard many good things about the use of adult stem cells and stem cells from the blood in umbilical cords, and I would fully advocate stem cell usage from those sources.
Stray Thoughts 
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. I mentioned at the end of the post.
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…
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Ive got it to
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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. 🙂
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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.
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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.
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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.
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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.
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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
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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).
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I was diagnosed with Transverse Myelitis this year. Luckily, mine was very mild and i never had paralysis. As a 32 year old man currently finishing up training to be a physician, it was very scary. I got worked up for everything from MS to Lupus. I still get weird sensations from time to time (especially if I am not getting a lot of sleep). I don’t know why this happened, but I do thank God that it wasn’t worse. I have so much more respect for my patients that had a much more severe case and I thank you for creating this blog. It was very scary when I didn’t know what was going wrong with my body. Occasionally I get cramping sensations, but as no cause was found, I am just gonna roll with it for now. For all of you that were affected so much more sever, I am so sorry. You all will be in my prayers. If anything, this did bring me closer to God. Maybe that’s why it happened. There is always a reason for everything. God bless you for creating this site.
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Just a few weeks ago I was told that what I had experienced was a case of Viral Myelitis. I had my legs go numb, never paralyzed Thank God. Very clumsy though. But, I am left with numbness in my left leg (about 50%) and foot (100% numb), muscle spasms (my left arm is twitching while I type this), eye and mouth twitches that are maddening, because most people won’t see it, but I feel it. I also get chest pains like I’m being crushed and shivering that you would expect after a dip in an ice bath. I’ve had severe depression and no reason for it. I was told it was a spinal cord injury but for whatever reason my thnking and memory has been impacted. Isn’t that your brain?? not spine….
I noticed that hot and cold make my symptoms worse. Cold increases my numbness and actually brings some of it back to my right legs, and a hot bath will cause all kinds of unpleasant sensations from pop corn popping under my skin to a feeling I can only describe as having hot oil flicked on my skin.
Neuro says that these are minor residual effects. I don’t feel like it is minor. I was told it should go away in a month, but it hasn’t changed and it’s been a while.
I hope anyone that finds themself with this condition can have some recovery. God Bless.
I’m sorry you’re having to deal with this. I had many of the same sensations the first couple of years. My neuro told me I would probably regain much in the first two years, and whatever I didn’t regain I’d be used to by then. I thought, “Yeah, right! I’ll never get used to this!” But I did after a while. I thank God I did regain much, but I do still have odd sensations (one hand feels like it has a glove on, both feet don’t have full sensation, can’t wear my wedding ring because it causes a pinging sensation). But it is all much less than it was in the beginning. I hope the same will prove true for you.
A lot of illnesses, particularly spinal cord issues, can cause depression and affect memory and thinking even if the brain has not had any injury. I can’t say for sure, but I wonder if it is just the mind processing along with the body, trying to figure out what’s going on and what the new “normal” is. My first year or so I was hypersensitive to noises – even casual conversation and background music in a restaurant made me feel like I was going to jump out of my skin. That still bugs me a bit but not nearly as badly as it did at first.
If you haven’t found them yet, there is a great group called Transverse Myelitis Friends at https://www.facebook.com/groups/TMFolk/. It is a closed group and only those in it can read the posts in it, so people can feel free to ask or comment on whatever they need to. All you have to do is click on where it says Join Group, and someone will add you in. It’s a great place to find people with similar symptoms to ask questions of and compare notes with.
Barbara @ Stray Thoughts https://barbarah.wordpress.com
On Mon, Feb 2, 2015 at 2:53 PM, Stray Thoughts wrote:
>
Thanks for the kind words. I’m hoping I recover soon. This stuff makes you feel like you’re going crazy. Just had a weird thing where it was like fireworks going off in my vision. I think half the people at work think I’m faking something. There is just no way to fake stuff this bizarre. Very scary. Just thankful I’m not completely paralyzed.
You are so right, it is not what our challenges are, but what we do about them and looking upwards and allowing God to lead through the all. Thank you for such a great post!
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I was diagnosis with Guillian Barre on October 23, 2014. I was told in May 2015, I had CIPD, now I have been told I have Transverse Myelitis August 2015. It is a shame that the doctors don’t do more research before giving a diagnosis. I have complete paralysis and I am praying to God for a miracle due to their mistake. I don’t know what to believe. I have the bowel and bladder incontinent. I had so many test, 6 MRI’s, 4 scat scans, biopsy, several x ray’s, 60 + blood test, 2 emg, I was told my muscles and sensory nerves are good. I know God will restore my body back to good health. They also gave me 2 Ivig treatments not knowing what I had. I had 6 months of physical and occupational therapy. I only experience it from the waist down. I was walking 15 to 18 miles a week. I had no symptoms at all. I got up on October 20, 2014 and my legs gave out.i was very healthy. Please pray for my strength and endurance while I recover. Please put your trust in GOD not man even though he gave the doctor’s the knowledge. I am very upset and frustrated and asking God to reveal it to me and provide me with the right doctor/doctor’s to treat me for the right diagnosis. I will walk again and regain a full recovery.
My daughter had brought home a virus the beginning of September 2014. I ended up catching it. Still I continued on with my normal daily life, taking the kids to school, attending bible study, co leading a MomsNext group, president of my book club, picking my two amazing kids up from school a then 5th grader and second grader. Rushing home to feed them dinner and get homework done just in time to head out to my sons football practice that my husband coached and my daughters cheerleading that I coached. My symptoms continued to get worse with me waking up on September 10th dizzy and with a fever of 104. I still made the kids breakfast and their lunches and called a friend to take them to school. Then I called my m-i-l to take me to urgent care. They diagnosed me with a virus and infection and prescribed antibiotics and pain medication. I went straight home took my meds and went to sleep. My amazing husband picked the kids up and took care of their needs that night. They came in to say good night st 8 and I took my next round of meds and went back to sleep. I woke up around 2 on 9/11/14 unable to move my right arm at all and I could not hold my head up by my self I had to use my left arm to hold my head up. My husband took me straight to the hospital. When we got there they started running tests, MRI, spinal tap etc. As time went on I lost complete control of both arms. The Dr.s had no clue. They thought meningitis, then maybe botchilisim, but it was just getting worse. I was having a hard time breathing and my legs stopped working. Finally they intubated me and life flighted me to the University of Utah. There the did another spinal tap, CT scan, MRI, blood tests and finally came to the diagnosis of Transverse Myalytis. At that time I was completely paralyzed, the right side of my face was paralyzed, and I was unable to breathe on my own. I started Plasmapheresis 5 rounds. Slowly I started getting movement back in my legs. I ended up having to have a tracheotomy and a feeding tube placed in my side. Then I had 2 rounds of IVIG treatments. By that time I started to stand, but was still completely paralyzed for the waist up. I was then transferred to rehab for two months where my legs continued to get stronger and I started to get movement in my left hand. I was released to go home the end of November by December I was back in the ICU for pneumonia I was then transferred to an advanced care hospital where I stayed for 2 months then I was transferred to Craig Hospital in Denver for more rehab and the hopes of getting off the ventilator. I stayed there for two months and achieved the goal of eating for the first time since everything happened. After being released to home I have had the most amazing friends that have stepped up to help care for me so my husband could go back to work. We have also had people bring dinner to us 3 times a week since this has happened. I am vent dependant only able to go off vent for about 4 hours a day but end up suffering migraines and severe nausea. I can move my left hand pretty good but still cannot move my arms or neck. I can walk short distances with a portable vent, neck brace, and arm braces. I work as hard as I can to get better and give the rest to God. I am blessed with the most amazing husband that didn’t leave my side through all of my hospital visits. He continues to fight the insurance company for some kind of help. I told my husband right before they life flighted me out that I was going to be ok. That God had made me and made me strong enough to overcome this. I still believe to this day that I will be healed. When this will happen is in Gods hands and timing. My TM attacked my brain stem and spinal cord C1-C7. I have not met anyone else who has had the same symptoms as me nor have any of my Dr.s ever seen a case like mine. What can I say I’m unique!
My symptoms are pretty close to yours, minus the paralysis so far. Docs are clueless and some have wasted MONTHS of time before getting me to care that may help. No treatment. No diagnosis–all the dozens of labs done are inconclusive. No physical therapy. Symptoms progressing. And still I wait to find out how we’re going to treat the cervical spine demyelination and cord inflammation.
Three months is all it took to go from elite runner to can’t get up off the floor without pulling myself up using the bed or a chair. Tripping over my left leg (right foot hits it) was one of the first symptoms, noticed back in December and led to a nasty fall while running.
I’m sorry, Mike. I hope you get some answers soon.
Hi there my name is Rezaan Achmat, from South Africa and saw u on a program called “The day my legs stopped walking”. I too have Transverse Myelitis since the age of 1½ years old. I’m 24 years now and just seeing someone else with the same condition and here in South Africa its not well known at all. But I guess its all over like this lol. I just want to say thank you for giving the strength to want to do more for myself by wanting to more research on treatment for people with Transverse Myelitis.
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God lead me here, so I give HIM the praise. I am 56 yrs old, and a very recent TM diagnosis has been confirmed after going through phases like most of you for two years. First, I was referred for carpal tunnel in my right hand, but the EMG said it was ulnar nerve entrapment, so a revision surgery was done that left the rt arm from elbow to fingertips numb. I had a ruptured disc in 1999 with surgery @ l4-5, S1-2, so as my legs became weaker “my back” was considered the problem. The arthritis in left knee hindered walking but I could still do daily living. Jan 2015 – May 2015 my Dad was hospitalized 5 times and I could not help my Bro & Sis as I had done, could not walk long distances. I was accused of being lazy by friends, and my Church could not see that I physically could not do all the jobs they pushed on me and work full-time too. Every hour I prayed for help, every day. By August I couldn’t walk to shop for groceries, at 20 minutes, everything went numb, my legs so shakey, and I just cried. In October my husband had a behind the eye stroke. More hospital time with long walks, up hills from parking lots. By November, I was noticing my right leg was so numb by walking at end of day to my car that I could not drive and my balance was horrible. I went to ER on a walker and they couldn’t get a MRI that night but did head and spine CT’s. They thought I had a stroke event because full rt side was numb. But that was not the case. I was sent home with pain meds (I am numb) and told to see neurologist. I spoke to my husbands neurologist, who ordered MRI’S and TM was found. I will have repeat MRI’s in 6 months, she suspects I have multiple sclerosis. So I am in therapy, my balance has improved most days, and I now use a cane. Yesterday I could not get through my therapy, but on Monday I could. I hope and pray this isn’t where I’ll stay, but if it is then God has a reason for me to be in this stage and I’ll try my best to do His Will. I appreciate reading all of your stories and the message of HOPE they carry. Don’t give up!!! May God Bless us all!
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My sister is suffering from TM. I just need some answers about her recovery and if there is still hope of her recovering fully. I’ve read a lot of things that have depressed me please can anyone get back to me. she has been battling it for almost 12 months now and she’s still not walking or feeling from her hips downwards there has been some progress but I want to know if it’s significant enough to hold on to the hope of full recovery
Hi Tara. It’s just hard to say what kind of recovery one will get. The standard answers is that 1/3 of TM patients get full or almost full recovery. 1/3 get almost none, and 1/3 get something in between. It sounds like she’s had some improvement – whether she’ll get any more is just unknown. Has she had physical therapy? That was a bit help to me. I recommend a TM group on Facebook called TM Folks: https://www.facebook.com/groups/TMFolk/. There are a bunch of good people there with a wide variety of experience.
Thanks a lot. Yes she does therapy 5 days a week. I’ll check the facebook group thanks again.
I really hope someone gets back to me. At first she couldn’t feel her lower back and had to use a catheter, she was also feel tingling sensations. the sensations are gone now, she is no longer using the catheter although she is not yet fully in control of her bladder. But the major issue is for her to regain feeling and movement from her hips downwards…i hope there’s still hope
Silvio D. August 27 2017. Alot of peole with Tm dont know what caused it to happen i got tm from a vaccine Tdap that some doctor had given me after roofing accident though it would be only a tetanus shot . So be very careful about vaccines they. peopled lives . im 58 you dont. need. Tdap whooping cough vaccine 4 injuries
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I was diagnose with Guillian Barre October 2014. I was walking 15 to 18 miles a week. I just got up one morning and could not walk. I had no symptoms prior to the illness. It has been 3 years and 8 months. Praise God I can feel everything now. It was from the waist down. I have had several rounds of physical therapy. The doctors gave me muscle relaxers for 9 months which should have never happen because my muscles were already weak. I was told by a doctor that should have never happen. I am praying that I know God has a plan for me to share my story all over the world. I will walk again in his timing. I am getting stronger and stronger. It has been a long journey for me especially when the doctors don’t have enough study on the nervous system. It is so rare that your body basically has to heal own its own without a lot of medication. Thank God I only take Tylenol for the pain. I did not want to get addicted to a lotof medication. I will walk again. My favorite scripture Is All things works together for the good of those who love the Lord that is called according to his purpose. You have to stay strong and keep the faith because it is a very devastating virus. I continue to trust God at all times and know he is a mighty healer. The doctors have the knowledge but he has the healing power. There is so much more I could say about this virus. I am praying for everyone that has to endure this experience. May Gos bless each and everyone of you. Trust God’s Timing and he will prevail.
Thanks so much for sharing, Shirley. It’s a rough road, but God is good and faithful.
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Thanks so much for stopping by and commenting, Paula! I have friends with fibromyalgia–I think a lot of neurological, autoimmune illness share some symptoms. I’m sorry to hear you are disabled. I’m glad You could be encouraged by what God has done.
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