14 replies to this topic

[LeeS]

hey folks,

only joined on here yesterday, just wondering if anyone on here has TM? Ive been looking for people who have it to chat to but so far come up with nothing(N)

Well im bored so ill tell you a bit about what happened to me.

when i was 13, just went to go to school, and whack, im on the floor! after weeks of tests and doctors poking and proding me they conclude they dont have a clue whats wrong with, then next minute a junior comes and says you have a thing called Transverse Myelitis which means your paralysed at T12. well this was a hard thing to take in, and even to this day i still cant work out how walking to school ended up with me lyin in a hospital unable to move. 4 and a half years on no still cant work out why its happened.

Life goes on is what someone said to me and thats theway ive got through it all. being in a chair means absolutely nothing, just make slife more of a challenge, yeah some days i feel s***e but the next is brilliant:) just have to get on with it i suppose.

soo, has anyone else here got this weird and confusing condition??

[mcwriter]

Type in transverse myelitis in the search box located upper right of your screen. Be sure to choose "Forums" so it will search all of the forums and not just the current forum you are looking at.

There are others on here with TM, they just haven't found you yet. Give it a little time.

[The Black Sheep]

Well, Welcome, first of all. I'm a fellow TM diagnosis, also "injured" at 13. I'm 25 now, but I put "injury" in quotations because it didn't require a fall or anything to be "injured".

I have a similar story, which is in my profile. We only guess that it was a mixture of Mono and a slight trip off a trampoline that may have caused it. I didn't fall, really. I just tipped backwards while trying to get on the thing. 5 days later I'm throwing up with a massive headache, I fall asleep and wake up unable to breathe properly. I couldn't move anything from my chest down, and for the most part things have only improved about 30%. To be optimistic, most of my recovery have happened in the passed 5 years, which most doctors told me was impossible. I'm level T5, we're guessing. I can walk with a walker about 300 feet before my knees buckle. I can stand with balance or a crutch, and I have almost normal sensory, which has been the biggest improvement. Life does go on, but it was a confusing injury that didn't really come with an explanation.

I know there are other members here with TM, and we're an open book for the most part. Feel free to ask questions. I've found this place to be one of the most uplifting, and people actually do understand what you're going through and can offer advice about EVERYTHING. Even the uber-personal stuff no one wants to openly talk about.

Welcome!

[agentwalker]

Another with a TM Diagnosis here , Was 18 when it happened and just turned 29 now.

Was watching the TV late at night, once that had finished I started sorting the bed out, turned to flick the light off and felt like I'd pulled a muscle in my stomach when twisting. Sat on the bed for a few min's to let it settle down when my left leg started to twitch uncontrollably when keeping still.

Started to walk around to run it off but gradually I could feel the muscle supporting the back of the knee getting weaker so the more I bent at the knee I was struggling to support my weight. eventually I decided to sleep it off so went to bed and got up in the morning, went to stand and the strength in my legs just went, managed to get on my knees and crawl a few yards before the top muscles went.

Parents then phoned the doctor and while waiting everything went arms hands etc, was I hospital for 7 months and managed to get the use of my arms back and partial use of my hands and a little wiggle of a toe .

[photogal]

I'm 17 and have TM at T4/5/6. I was only recently diagnosed - just about 6 weeks ago. We don't know what caused it but some of the ideas include Lyme disease and Mono (which I had in April, when my symptoms started). It's hard to tell exactly when the TM started since no one would run an MRI even though I could no longer control bladder or bowel function or walk more that 50'. Finally, my mom loaded me in the car and drove 100 miles to UF where they ran an MRI and discovered my spinal cord is literally eaten away at those three levels with only a small sliver left.

Since April I've gotten progressively weaker to the point I'm partially paralyzed now. I still have some movement but there are times I can't move at all. My sensation is completely messed up and I either can't feel or feel things wrong (ie: pain doesn't hurt but light touch or scratching an itch is excruciating).

The rotten part is I'm also having similar problems in my arms but no one can figure out why. I'm seeing a neurosurgeon in a couple weeks and hopefully he'll have an idea. There wasn't another lesion in the c-spine when they ran the MRI in September but there are concerns another one is starting. There also are concerns that I have CIDP so it's really up in the air right now. B/c of this, I am getting a power chair through the insurance and will purchase a used manual chair.

I'm still very new to all of this. If you have any advice that would be great!

Edited by photogal, 23 October 2010 - 12:01 PM.

[LeeS]

Hey,
Theres more people here than I thought!! It's great cause I thought there was know one to start with, and we're all around the same age too

Going by what I've read we're all going through roughly the same thing when it comes to movement and sensations. Mine are really muddled up like yours are! It's really wierd when everything is back to front, do you find it the same?
The Black Sheep and agentwalker, I too have gained some movement untill feb when I damaged my legs in a car crash. I managed to get up to about 100mtrs with crutches even though it took me over an hr, was better than nothing I thought, so perseveered (can't spell it) and gradually this time came down to just under 30 minutes It all seems to happen relatively fast, my doctor said mos cases take up to a week before full on set, so far it seems like its only a day roughly?
agentwalker, I spent about 5 months in hospital and it felt like the longest 5 months ever! Lifes gone by so fast since the day I got out though, I have slight movement in my left big toe, but when it moves I think its my right. I was like you when I first collapsed, I fell over a few times but got back up then they just went from me completely and I had no control of them. Here's hopign your recovery carries on and you get use of your hands back! We all live in hope eh!

photogal, hello and welcome, I'm really surprised they weren't willing to do an MRI, it was one of the first things that happened to me! When I was in hospital they did loads of tests and the only possible one was Limes Disease but it turned out to be wrong, so they still havent figured out what it was that caused mine. My movement and sensation varies from day to day, one minute ill be able to feel something on my leg the next i wont :S I still gt confused by it yet, Hope fully theyll sort out whats up with your arms Ive never had a power chair so cat help out there yet I always use a manual one which I get on great with but I suppose this is mainly cos I have good upper body strength which I'm presumming its harder for you when your having problems with them? I saw a neurosurgeon and it was him who diagnosed me with TM and has been most helpful so with come luck your N/S will be the same for you! Aa for adivce the best I can give is keep your chin up and even though things maybe hard don't give up, Ino your only at the early stages of Rehab but carry on and you'll get there and life will start to improve. If you have any questions either ask here or message me:) I too have Bowel and Bladder problems which were a pain in the backside to start with but now I'm on top of it and have no problems

I look forward to keeping in touch with you all!

Lee

[angryberd]

/

Edited by angryberd, 12 November 2010 - 07:54 AM.

[angryberd]

photogal, on 23 October 2010 - 11:59 AM, said:

I'm 17 and have TM at T4/5/6. I was only recently diagnosed - just about 6 weeks ago. We don't know what caused it but some of the ideas include Lyme disease and Mono (which I had in April, when my symptoms started). It's hard to tell exactly when the TM started since no one would run an MRI even though I could no longer control bladder or bowel function or walk more that 50'. Finally, my mom loaded me in the car and drove 100 miles to UF where they ran an MRI and discovered my spinal cord is literally eaten away at those three levels with only a small sliver left.

Since April I've gotten progressively weaker to the point I'm partially paralyzed now. I still have some movement but there are times I can't move at all. My sensation is completely messed up and I either can't feel or feel things wrong (ie: pain doesn't hurt but light touch or scratching an itch is excruciating).

The rotten part is I'm also having similar problems in my arms but no one can figure out why. I'm seeing a neurosurgeon in a couple weeks and hopefully he'll have an idea. There wasn't another lesion in the c-spine when they ran the MRI in September but there are concerns another one is starting. There also are concerns that I have CIDP so it's really up in the air right now. B/c of this, I am getting a power chair through the insurance and will purchase a used manual chair.

I'm still very new to all of this. If you have any advice that would be great!

Hey! I was diagnosed with TM in 2009 (on April 1st ironically enough ) Haha the night before it happened I was at the Britney Spears concert, and i got home around midnight. I woke up for class the next day and realized my legs felt like they were asleep or something. My parents gave me a muscle relaxer and let me stay home from school, so i went back to sleep. I woke up a few hours later and when i went to step out of bed i fell straight on my face. My parents took me to the hospital where they ran a few MRI's and had to but in a catheter haha, anyways, I was sent to childrens medical center where i finally got a diagnosis. I was in the hospital for about 11 days before I was released. When I got home I began physical therapy 3 hours a day, which sounds ridiculous, but in retrospect i'm so thankful my parents made me do it! But what helped me the most was this machine called the Alter-G Trainer. After my physical therapy each day I would go workout on this machine for and hour and I seriously recommend it if you can find one! When I first started, it was tricky to figure out how to get in because i couldn't stand on my own but we figured out a method. Basically, it is an anti-gravity treadmill which holds you up at any percent of your body weight you want. It wasn't made for people with TM but a family friend suggested i try it out. It was great because I didn't have to worry about falling because you are strapped in. I started off at walking at an extremelyyy slow rate, and practically none of my body weight. I was able to practice moving my legs and slowly added body weight. After only 1 month I was at 65% of my body weight and able to walk at a faster pace in the machine, and i was able to walk with only a cane. Its about a year later now and i'm almost fully recovered with the exception of some sensory issues. My best advice is to keep a positive attitude and be able to laugh about it sometimes (haha my boyfriend changed my name in his phone to "hot-wheelz" when i was in my wheelchair) Even more importantly, stick with physical therapy as much as you can because it helps so0o much!


Here are some videos of the alter-g!

[mel2446]

Hi

Me just joined the forum too,diagnosed with TM in 96, like many on this thread, i am partially paralysed, having regained some motor and sensory, think i am now affected with weakness of the legs (paraparesis), which apart from this my other biggest problems are pain, spasms, bladder, and other commonly associated probs. However, can i also another question concerning bladder management, at the moment i use ISC, and sheaf and leg bag, but my specialist wants me to go onto the supapubic catheter - anyone got any opinions and thoughts

Cheers

[llwilwerding]

Hi Newbie!
I noticed your posting and decided to join the forum site (I’m a Newbie as well). Right now I have only been viewing and reading other peoples stories and decided to share mine.

I have recently been diagnosed with TM on 3/2011 and am 25 years old. I started experiencing numbness in my feet on the right side of my body and at first just ignored it. It eventually worked its way up to my stomach and buttocks area before I decided this was more than something that was just going to go away. My symptom’s at that time where major numbness (Rates at 95% out of 100), sensitive to light touch, when aggressively touched I couldn’t feel anything, and always felt cold when it wasn’t.

After going into the ER and being tested for everything my MRI's came back and they noticed a lesion on my spinal cord that’s been causing all the problems (To be honest I was happy they found something to explain what I was experiencing because I felt like was going crazy).

I stayed in the hospital for 4-5 days and they started me on Steroids (50mg 13 in the morning and 12 at night every other day for four weeks.. This pills taste nasty) which eventually brought down the swelling in my spinal cord and now my numbness is at 10% a vast improvement. I am being monitored every 6 months for the next 2 years and then once a year for the next 3 years.

As of today I have regained most sensation on the right side but have been experiencing new symptoms. I get a warm sensation that spurts down my right leg (Only lasts a few seconds). And I have also had some pin pains in my chest at night, some numbness on my left pinky along with blurred vision, and loss of concentration. The doctor placed me on Baclofen recently to help with my joints and muscles since they also have been aching. I would like to say I'm improving but I'm not sure. This illness is so different from person to person that it’s hard to know what’s going to happen next.

[Heretic]

Hi,

I started with numbness and then lack of leg control and bladder problems. I was admitted on Good Friday! Gr8!

The consultant told me that the prognosis fits a distinct rule of thirds: one third recover well, a third gain partial recovery, and a third fair poorly. I fell into the last category, unfortunately.

The consultant gave me a clear explanation for what happens in TM. A few weeks before, I had suffered a mild flu-like bug that lasted just a few days. My immune system had naturally produced antibodies to attack the virus. Unfortunetaly, it is possible that the virus's protein coating can look very similar to part of the nerve. That's the theory. It results in demyelination, damage to the fatty sheath that kind of insulates the nerve. Often the nerve is repaired, but not in my case. As well as the usual steroids, I had to have plasmaphersis, replacement of the plasma, to stop the march of the condition. This worked, but a year or so later, I had further problems that made the docs believe I may have Neuromyelitis Optica, but the tests proved negative. They couldn't say if I had that or MS. Anyway, they teated me with Rituximab and all the relapses stopped. My case is a bit unusual; most fair better than me, so be discouraged by my example.

All the way though it I kept a sunny disposition, until I went home. That bit was hard, emotionally. But life goes on. There's always a way and there's nothing you can't get used to. That's my motto.

Cheerio
Heretic

[ZEN12many]

I got TM in 2004 when I was 58. On December 6th, I purchased a toilet and had felt a little pain in my back as I lifted the toilet out of the box. It wasn't unusual for me to get a little back pain. Later that evening, though, the pain was very unusual. Instead of nerve-pain (like a disc pressing on the nerve), which is what I usually felt, this pain felt like the muscles in my back were being twisted. And the pain was on both sides of my back (usually I would only have back pain on one side when I lifted something wrong).

The next morning, I could tell something was wrong with my legs but I could still walk and I just thought that I had messed up my back again by lifting something wrong and I would get better if I took it easy for a few days. I layed on my bed until late afternoon and then thought I better eat something. When I got up, I almost fell down but caught myself on a chair that was by my bed. I could walk if I kept my legs completely straight and started walking to the kitchen. I fell before I got there. That was the last day I walked unassisted - December 7th, Pearl Harbor Day, "a day that will live in infamy".

I went to ER and they diagnosed me pretty quickly (confirmed diagnosis later with a spinal tap). At first I was paralyzed from the knees down and put on steroids. Then three days later, while I was still in the hospital, I felt the same twisted-muscles pain in my back and the paralysis moved up to my waist. Then they filtered my blood. In the next 12 months, I improved but I am still in a wheelchair. The info they gave my in the hospital said that "people who get TM often report recently having had a vacination (e.g., flu, or tetanus)". I had had a tetanus vacination 15 days before I was paralyzed.

But life goes on.

[Ratticis]

Back in 2007 at the ripe old age of 22 I was attacked by ninjas while in the shower and one of them knocked me down and I hit my side on the side of the tub and ruptured my bowel. About 4 days later I woke up unable to move from the chest down. TM. Quite a few of the lucky 1.34 in a million on here

[LeeS]

angryberd, on 12 November 2010 - 07:46 AM, said:

photogal, on 23 October 2010 - 11:59 AM, said:

I'm 17 and have TM at T4/5/6. I was only recently diagnosed - just about 6 weeks ago. We don't know what caused it but some of the ideas include Lyme disease and Mono (which I had in April, when my symptoms started). It's hard to tell exactly when the TM started since no one would run an MRI even though I could no longer control bladder or bowel function or walk more that 50'. Finally, my mom loaded me in the car and drove 100 miles to UF where they ran an MRI and discovered my spinal cord is literally eaten away at those three levels with only a small sliver left.

Since April I've gotten progressively weaker to the point I'm partially paralyzed now. I still have some movement but there are times I can't move at all. My sensation is completely messed up and I either can't feel or feel things wrong (ie: pain doesn't hurt but light touch or scratching an itch is excruciating).

The rotten part is I'm also having similar problems in my arms but no one can figure out why. I'm seeing a neurosurgeon in a couple weeks and hopefully he'll have an idea. There wasn't another lesion in the c-spine when they ran the MRI in September but there are concerns another one is starting. There also are concerns that I have CIDP so it's really up in the air right now. B/c of this, I am getting a power chair through the insurance and will purchase a used manual chair.

I'm still very new to all of this. If you have any advice that would be great!

Hey! I was diagnosed with TM in 2009 (on April 1st ironically enough ) Haha the night before it happened I was at the Britney Spears concert, and i got home around midnight. I woke up for class the next day and realized my legs felt like they were asleep or something. My parents gave me a muscle relaxer and let me stay home from school, so i went back to sleep. I woke up a few hours later and when i went to step out of bed i fell straight on my face. My parents took me to the hospital where they ran a few MRI's and had to but in a catheter haha, anyways, I was sent to childrens medical center where i finally got a diagnosis. I was in the hospital for about 11 days before I was released. When I got home I began physical therapy 3 hours a day, which sounds ridiculous, but in retrospect i'm so thankful my parents made me do it! But what helped me the most was this machine called the Alter-G Trainer. After my physical therapy each day I would go workout on this machine for and hour and I seriously recommend it if you can find one! When I first started, it was tricky to figure out how to get in because i couldn't stand on my own but we figured out a method. Basically, it is an anti-gravity treadmill which holds you up at any percent of your body weight you want. It wasn't made for people with TM but a family friend suggested i try it out. It was great because I didn't have to worry about falling because you are strapped in. I started off at walking at an extremelyyy slow rate, and practically none of my body weight. I was able to practice moving my legs and slowly added body weight. After only 1 month I was at 65% of my body weight and able to walk at a faster pace in the machine, and i was able to walk with only a cane. Its about a year later now and i'm almost fully recovered with the exception of some sensory issues. My best advice is to keep a positive attitude and be able to laugh about it sometimes (haha my boyfriend changed my name in his phone to "hot-wheelz" when i was in my wheelchair) Even more importantly, stick with physical therapy as much as you can because it helps so0o much!


Here are some videos of the alter-g!

that machine looks ace!! I saw someone using one in the spinal unit I was in and it seemed to work wonders for them! hopefully it keeps gettign better and better for you! physio is really helpful i found too but i got to a point where it stopped being of benefit, did this happen to you at any stage??

I also get called hot wheels or wheels of thunder by some due to the fact i make so much noise haha

mel2446, on 31 January 2011 - 07:47 PM, said:

Hi

Me just joined the forum too,diagnosed with TM in 96, like many on this thread, i am partially paralysed, having regained some motor and sensory, think i am now affected with weakness of the legs (paraparesis), which apart from this my other biggest problems are pain, spasms, bladder, and other commonly associated probs. However, can i also another question concerning bladder management, at the moment i use ISC, and sheaf and leg bag, but my specialist wants me to go onto the supapubic catheter - anyone got any opinions and thoughts

Cheers

Hi,

I dont have much knowledge of supapubic catheters, I know of a person who has one and they say its really good and is alot easier to live with, i wouldnt like to say to much due to not experiencing it though! i have been offered one but for just now i am happy with isc and a leg bag, this may change in future depending on where life takes me!

I hope you can find some insight into them, theres probably a thread on here discussing cathaters etc

Lee

[LeeS]

llwilwerding, on 12 May 2011 - 10:21 PM, said:

Hi Newbie!
I noticed your posting and decided to join the forum site (I’m a Newbie as well). Right now I have only been viewing and reading other peoples stories and decided to share mine.

I have recently been diagnosed with TM on 3/2011 and am 25 years old. I started experiencing numbness in my feet on the right side of my body and at first just ignored it. It eventually worked its way up to my stomach and buttocks area before I decided this was more than something that was just going to go away. My symptom’s at that time where major numbness (Rates at 95% out of 100), sensitive to light touch, when aggressively touched I couldn’t feel anything, and always felt cold when it wasn’t.

After going into the ER and being tested for everything my MRI's came back and they noticed a lesion on my spinal cord that’s been causing all the problems (To be honest I was happy they found something to explain what I was experiencing because I felt like was going crazy).

I stayed in the hospital for 4-5 days and they started me on Steroids (50mg 13 in the morning and 12 at night every other day for four weeks.. This pills taste nasty) which eventually brought down the swelling in my spinal cord and now my numbness is at 10% a vast improvement. I am being monitored every 6 months for the next 2 years and then once a year for the next 3 years.

As of today I have regained most sensation on the right side but have been experiencing new symptoms. I get a warm sensation that spurts down my right leg (Only lasts a few seconds). And I have also had some pin pains in my chest at night, some numbness on my left pinky along with blurred vision, and loss of concentration. The doctor placed me on Baclofen recently to help with my joints and muscles since they also have been aching. I would like to say I'm improving but I'm not sure. This illness is so different from person to person that it’s hard to know what’s going to happen next.

hey that sounds a bit like me to start with although mine mainly happened when asleep! i just got up and smack i was on the deck! i had the whole procedure of steroids etc and ended up spending 5months in hospital:( if you stay positive and think your improving itll help you alot mentally its mega different! there is some similarities but not many, i hope you carry on improving! keep us informed:)

lee