[Editor's note: In 1996 at the age of fifty-one, Hollywood writer Allen Rucker was struck by a rare disorder - transverse myelitis - that left him a paraplegic. The following excerpt is from his autobiography The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life.]
Along with many deluded also-rans in Hollywood, I kept thinking I had a showbiz career, albeit a lowly one, but even that was largely a fiction. TV specials, not to mention fatuous talk shows, come and go, and people who write them are equally dispensable. Some writers find a groove crafting material for particular stars and milk it for years. They are the ones whose skills match the job and you can count their number on one hand. The rest of us are often like the shows we write for–one-shots. For whatever reason–age, talent, attitude, whatever–I was easily forgotten in the let’s-try-someone-new mentality of network brainiacs.
But I was still hanging in there, with no idea of what else to do, and 1996 was actually a good year. I wrote more awards shows, including a fly-by-night, pay-you-in-the-parking-lot scam in Las Vegas called The World Travel Awards; got to work on some great live shows at the 1996 Olympics in Atlanta; and collected residuals from George & Alana. We even took a family trip to Sweden, our first vacation in eight or nine years. There was always the inevitable panic between jobs, but that went with the territory. We were doing fine.
Then, one day–December 10th, 1996–I became paralyzed. Like the day Elvis died or OJ got acquitted, it’s not something that you forget. It gets stuck in there for good.
On that fateful Tuesday, I was mostly thinking about an arthroscopic procedure on my right knee that was going to happen two days hence. This small, in-office operation was important to me. It would fix some torn cartilage in my knee so that I could soon start running again after a two-month hiatus. I loved to run. I had been running almost continually since college.
I was on the bed, reading an old issue of the New Yorker, and nodding out, when my legs suddenly started aching and tingling at the same time. The sensation began in the back of the thighs and moved to the waist. Then a sharp pain hit my midsection. It was excruciating but also diffuse, inexact, and short-lived. Imagine being branded by an around-the-waist branding iron.
After that sharp pain came and went, my first reaction was a general uneasiness, which forced me to move around to outmaneuver the now intermittent numbness and tingling. I got up from the bed and walked around the room, not weak or wobbly but just bothered to distraction by a discomfort that I couldn’t describe, even to myself. I tried to relieve my physical uneasiness by sitting on the couch and putting my legs over the armrests. That didn’t work. Then, thinking I had strained a back muscle or experienced a weird back spasm, I lay on the floor. That didn’t do anything, either. I was no longer in any pain, but I was in an odd state of restlessness and apprehension. I knew this was virgin physiological territory but didn’t announce it. Nobody likes a whiner who can’t describe what the hell he’s whining about.
My wife, Ann-Marie, came in after a hard day of teaching and offered an instant, ready-made diagnosis, partially predicated, I’m sure, on the fact that I was lying in bed on a weekday afternoon, didn’t have a job, and didn’t seem particularly sick. The aches and pains associated with the flu, she said. It sounded right. I’d thought of this myself, later to realize that this was part of a mutual-denial game she and I had perfected after some very rough years. “Nothing’s wrong. Everything’s fine. Not to worry.” I headed for a warm bath, anxious to soak my way through my condition.
The bath just increased the irritating tingling, and I had an overwhelming urge to keep moving. Later I thought: Was this the healthy nerves in my back telling the damaged nerves in my legs, “Hey, you only have a few minutes to keep functioning, you idiots, so don’t sit around a bathtub. Walk! Move! Tap-dance!” I kept getting weaker. Out of the bath, I wobbled a bit and headed back to bed. Call your doctor, Ann-Marie said, if that will make you feel better. I did, and he wasn’t in, but one of his associates had the same diagnosis as Ann-Marie: a nasty flu virus of some kind. Take two aspirin and a warm bath. I didn’t tell him I had already tried the bath treatment. I was sure I was overreacting and if I said anything hysterical, I would sound like a fool. Also, being from the American Midwest, I hated to be sick. In general, when people get sick, so my Calvinist forbearers taught me, it’s a sign of weakness or laziness, or a cry for attention. When people make themselves sick–which I thought was exactly what I was doing with all my consternation–they are gutless bellyachers of the first order and should be made to work overtime.
So Ann-Marie left to go to the dentist, I took two aspirin and got back in bed. The progression then began a fierce descent. One more trip to the same bath, a good fifteen seconds of immersion, and out in a flash, weakened, pained, and by now good and scared. I wobbled across the bathroom like a drunken fraternity pledge, grabbing the sink for support. Boy, some flu, I thought–the throat virus has landed in the inner ear, I figured, and upended my equilibrium. I’d better get back to the sack and stay there.
It took me another three or four minutes to navigate the fifteen or twenty feet to the bed, reeling and lurching the whole way. I made it back and lay there for a few minutes, almost in shock. The initial pain and irritation were long gone. Now I felt something much stronger: a diminution of movement. The problem during the trip across the bedroom was not just lack of balance, it was that I couldn’t pick my legs up and put them down without the effort it would take a normal person to walk through a vat of molasses. I still had feeling in my legs–if I pinched one, it hurt–but any motor response was slipping fast. Getting a leg from floor to bed was like picking up a thirty-pound deadweight, an experience that was soon to become as ordinary as sitting in a rolling chair. At the time, it felt like a slow death, from the soles of the feet upward.
Two more minutes and I decided more aspirin and more movement, more precious movement. I got up, hands on the bureau, and I flopped to the ground. I was now in a complete state of panic. My entire lower body had turned into a soft, unresponsive mass.
I crawled to the phone and called the doctor back. A half a dozen words out of my mouth, he ordered me to call 911. I did as told, still entertaining the belief that I was making way too much of this and, boy, would this be embarrassing if it turned out that I was just dizzy and weak from the flu. I called Ann-Marie at her dentist, and the dentist didn’t think I was overreacting. It was in my voice.
From that first tingling in bed to calling 911 was an hour and a half. Sudden onset, they call it.
Our eight-year old son, Max, arrived home from playing after-school basketball to hear my shouting. He located Ann-Marie’s eighty-five-year-old Swedish mother, Agda, who lived with us at the time. She helped me get on some pants just as two fire department paramedics burst in, ready for cardiac intervention. They were beefy action-hero types in clean, starched uniforms. My rescuers, so to speak, saw me lying there, crying but cogent, quickly assessed the situation, and essentially laughed in my face. They thought I was just trying to BS my way into a free ride to the hospital.
Imagine Hans and Frans, the dumb weightlifters from Saturday Night Live. Crossing their massive arms and dropping their portable defibrillator, their collective on-site demeanor went from “We’re in charge here!” to “What the holy heck is this?” This was not part of their training–a grown man in bed with weak legs. “This must be, like, a not very sick person,” all four brain cells discharged at once. “This must be a phony baloney!”
On top of being instantly paralyzed, I was now being dissed and demeaned. They thought I was having a panic attack or maybe a muscle spasm that any fool could walk off. I wasn’t comatose or writhing in pain. I wasn’t calling out to God or turning blue from oxygen deprivation, so to Ponch and Larry, I must be faking it, a whiner, a hypochondriac, a girly-man. I had no idea what was going on. I could barely describe the symptoms, let alone defend myself against their stony stares. I was still holding the phone when they arrived, trying to explain the situation to Ann-Marie. In tears, I told her I couldn’t move my legs or feet. “Yes, you can!” Ponch shouted out like a playground fourth-grader, “You can move your toes. I saw them move!”
Then Larry started lecturing me. “Hey, you know while we stand here talking to you, man, some old guy is probably dying of a cardiac seizure, man, someone who really needs us, so, hey, don’t waste our time, okay…” They then beckoned me to get up so that they could help me down the stairs. They figured Ann-Marie could take me to the hospital. They had more important things to do.
I tried to stand and again fell to the floor, whimpering. If I was faking it, I was doing an award-winning job. They had no choice but to take over. By the time they carried me down the steps like a 180-pound Baby Huey, my sense of self, fragile as it was, had vanished like the wind. This wasn’t like being in a nasty car wreck or breaking your leg and being helped off the ski slope. It was closer to an acid trip–everything was warped and screwy. “There must be some way out of here, said the joker to the thief.”
Max stood to the side and watched this all in silence. He kept saying, “Don’t worry, Dad, you’ll be fine,” but he was clearly as traumatized as I was. His recollection was that I was as scared as he’d ever seen me. “It’s like when I wake you after a nap nowadays,” he described it, “and you don’t know where you are–you had a weird, astonished, dazed look, your eyes wide open and your mouth slightly open.” Ann-Marie, her mouth bloated with Novocain, arrived just as they were wheeling me out the door. She confirmed that my eyes were “wide and terrified.”
The rescue unit loaded me into their ambulance and dropped me off at the nearest emergency room, at the now defunct Century City Hospital, saying no more than, “Something’s wrong with his legs or something.” Ann-Marie followed. My last trip to the hospital, at age fifteen, had been for a burst appendix that ruined my high school football career. This trip had every prospect of ruining my life.
The greatest fear among the attending ER staff was what is known as an “ascending” neurological disorder: that is, one that ascends up the body and cuts off nerve response to the heart or lungs and thus induces cardiac or respiratory arrest. Guillain-Barre syndrome, which is something like polio, tends to do this. Another possibility was some kind of stroke. Now, that’s a word that will send chills down your spine even when you can’t feel your spine. Or it could be a “presentation,” in doctor talk, that signals the onset of MS, or ALS (Lou Gehrig’s Disease), or God knows what.
I remember lying on that steel slab in the ER for an interminable period of time, waiting for something else to happen. My own doctor was on his way, and the staff didn’t really know what to do in the absence of some diagnosis that none of them was prepared or qualified to give. I was in no pain and, really, no discomfort, just the numb, creepy, impotent feeling of not being able to move my legs or wiggle my toes. I knew that if I went into cardiac or pulmonary arrest, these people could handle it. No horrible images of death or disease floated around my head. If the bottom half of my body weren’t just lying there like a lifeless bag of flesh, I would have felt fine.
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September 21st, 2007 at 2:33 pm
Email is 4wallis@comcast.net
I was stricken like you on Jan 5 2006. I had sudden onset TM but mine started in my chest area and worked it way down.At 7pm i had pain in my back and by 11pm i was paralized from the upper chest down to my toes. I had no problems with anyone until i got to the hospital because i was have major discomfort in my chest which ofcourse was my paralizes setting in. But when i got to the hospital and they saw it wasnt my heart then things changes. I was no longer a priority and i laid there watching my legs go lifeless. I kept telling everyone it was my back but the ER Dr. i had just thought it was a reaction from not drinking enough that night–I was having 2-3 drinks every night at that time–she had 2 big guys come in and try to get me out of bed and i did just what you did and fell to the floor. At that time they started to take me serious. My wife and i heard the ER Dr tell the guy that came to get me up that i just needed the help to get up and go home and have a drink and this would pass. She had also tried to sit me up earlier and since i couldnt do it she then put her hand behind my back and lifted me up and pulling a muscle in my hip. It took them 4 days in the hospital to determine i had TM. After that i got the best care available. I am imporving but at a slow rate. Feel free to contact me as i have not been able to find someone who has experienced the Same TM as i have.
Thank You
Dave Wallis
December 26th, 2007 at 9:24 am
I had a similar experience June 1,1999. Mine started as a “twinge” in my neck almost as if I had pinched a nerve. My boyfriend had to practically carry me into the ER about 45 minute later where they came in after several hours of leaving my lay there and told me I could get up and go home. My discharge papers were all ready. They told me it was a neurological response to something emotionally traumatic that must have happened to me. I actually remember the nurse being irritated that I was refusing to get up. When she finally realize that I wasn’t faking, they took me seriously. I was transferred to a different hospital where I spent 3 weeks in intense physical and occupational therapy. In that time I went from not being able to move my left side from the neck down to walking with a walker. After a few weeks of out patient therapy I started getting around with a cane. Now almost 8 years later I am back to work and leading a somewhat normal life. I know that I am very fortunate that I am able to walk again-sometimes even without my cane. I know I will never be the same person I was 8 years ago but in some ways it has made me stronger. You never get more than you can handle-I truly believe this.
January 7th, 2008 at 5:14 pm
My 15 year old son was stricken on June 15, 2004 and it recurred on December 27, 2007 at the age of 19. He was an active, athletic teenager. His back began hurting a few days before the paralysis finally took over. The tingling and numbness started on his left leg and moved up to his chest and then down his right leg. He was at a swimming pool and had been feeling “wrong” all day. He was wobbly and laid out for several minutes. When he tried to get up, he just kept falling back down. We called an ambulance and the paramedics thought he was just dehydrated. Several hours later in the ER, a neurologist confirmed TM. He is a T6 paraplegic. He can feel his legs, but he can’t walk anymore. I thank God my son is still here and thriving in spite of the paralysis.
January 11th, 2008 at 9:09 pm
One of my cousins who got TM last year around March 1st week died this January 2008. He suffered a lot and he was bedridden. He died peacefully in the hospital. He was just 32. He had bedsores that aggravated the problem as he was a diabetic too.
January 18th, 2008 at 2:37 pm
My dog was stricken with this (I know, it is not the same), but it is great to hear words describe the symptoms, and hear, for the most part, there is not pain. It is hard to see her in this state – alert, responsive, with absolutely no connection going from her brain to her limbs. The doc says to give her more time to heal (she has been this way for about a week), but at what point do you make the call? Humans can understand why their limbs don’t work – a dog can’t.
February 6th, 2008 at 8:43 pm
i had tm march 2007,i went to work with my siter sometime around 6pm on a friday,then i started feeling numbness around right side of my back within minuts traveled to belly roght side. then traveled to my right leg,and then stated vibrating and tingling, then my siter took me me to the er,they said the surgeon hit a nerve during suregery 2 weeks prior,so they sent me home, next day both legs numb and very high sentsitive to little touch,tingling…. then called my doctor on mond, she hooked me up with a neorologist,he says its something on my back,the ordered and mri urgent sameday.its was awfull inside mri,could not stop moving my legs , so much shooting pain, pins needles pain.so the results comes. i had tm.they transfered me to a bigger hospital where they were treating the sypmtons, now i feel better im 25 now. walk an live almost normally,but still have some pain on my right foot.
February 12th, 2008 at 9:30 pm
hi fabio,
u r very lucky that u can walk almost normally.can u pls tell me what treatment u get in hospital for TM,i am suffering from TM since may 2007 and till now i havenot recived any treatment.life is so difficult to live lving with t.m.so please help me and write whats are the medicing u got for ur T.m.
thanks
March 10th, 2008 at 10:48 am
I believe my son, now 2 1/2, has transverse myelitis. The doctors call him their “mystery patient” because they don’t want to admit that his 6 month immunizations left him paralysed the day after he received them. Only now, 2 1/2 years later are the mentioning maybe it was transverse myelitis since he is not walking indepedently and they have no other diagnosis to blame it on. Anyone aware of other children diagnosed w/ TM after immunizations?
March 18th, 2008 at 10:31 am
SUU,
I was diagnosed with TM October 2007. My neurologist treated me with 1000 mg of steriods (I forget the exact name) via IV for five days and then a pregnizone taper treatment for two weeks. I started feeling 100% better by the second day of steriod treatment. I was able to start walking again and have continued to recover to this day. Occasionally my back will be sore from day to day, I just hope it is not another onset of TM.
May 2nd, 2008 at 11:00 am
In 2005 after Actute Bronchitis followed by a Kidney infection I began having a warm tingling feeling down my spine leaving my legs weak for a few minutes but nothing permanent, this happened 3 times between March and Dec 2005 alway first thing in the morning. In Dec 2005 instead of having weakness for a few minutess I was left with permanent weakness in my legs. My Dr subscribed a seven day dose of Prednesone and an MRI. The MRI showed slight bulging at disk L11-L12 and was sent to physical therapy. By the end of Jan 06 I was walking with a cane.
Then Feb 16 I got out of bed and fell straight to the ground and could not get up. I spent two weeks in the hospital having every neurological test possible as well as an MRI of my entire body. I was given medicine for muscle spasm but that was it. When I was released from the hospital I still did not have a diagnois but I could walk with help and a walker. I spent the next six months taking more test still with out a diagnois. Finally I went to the Cleveland Clinc where I was diagnoised with TM and received 1000 ML dose of steroids for 3 days in a row. This helped greatly with the weakness but not the muscle spasms. After trying several oral medications for muscle spasms I had a Baclofen Pump implanted and while my right foot is still numb and has pins and needles both are bearable. I walk mostly with a cane but can walk short distances without it. I also take mega dose of Prednisone ever 3 months to ward off any further attacks. The lessons I have learned from my experience is not to give up find another Dr if you feel yours is not helping you. Keep your medical records and a journal of what you are going through the more information a Dr has the better they are able to help you. If I had had the high doses of steroids within the first day or two I might not have had as much damage. I have learned that I had to take control of my own health records and do my own research then question the Dr on what I had learned. I feel very lucky to be able to walk and I wish you all the best.
June 12th, 2008 at 3:14 pm
HEY
My mom was diagnosied with TM October the 4th 2004. She is partialy parilized from wast down. She is 39 now. I feel so helpless watching her just lay in pain. She was a scrub tech going for her RN. What meds did you receive. she has A LOT of problems with bowl movements. any suggestions from anyone would be greatly helpful. thank you for your testimony..
June 27th, 2008 at 10:24 pm
I was diagnosed with TM last month. I was in the hospital for 1 week and went home on a walker progressing to a cane and now “limping around”. It’s good to know that your not crazy and not the only one going through this. My family has been great but its an adjustment for everyone. I can no longer be the independent, i’ll just do it myself person I was. Having to ask for help is making me crazy!! My progress hasn’t changed much in the last 2 weeks but I have finally gone back to work, only for 4 hours a day but its better than sitting at home. Thanks for the encouragement
July 5th, 2008 at 1:38 pm
I was diagnosed with TM following a sudden attack of pain then severe weakness in my legs. This all happened over a 2 hour period and while I was at work. My boss called 911 and I was whisked off to the hospital. After several tests including a boat load of blood work, urine, CT, MRIs and a very painful lumbar puncture the diagnosis that was finally settled on was TM. I was treated with the 1000mg of medrol by IV for 6 days, but was not put on a taper like some of you. It helped me get back on my feet faster, I think. I spent a total of 6 days in the hospital and then was transferred to the acute inpatient rehab unit for another 16 days. I am very happy to say that I went from not being able to stand on my feet 6 weeks ago to now being able to use a walker for short distances. This is truly a scary disease and I know from reading what others have have written here that it could have been so much worse for me.
August 21st, 2008 at 2:37 pm
I was stricken by TM in April 2003..I had a cervical fusion in October 2002 and was doing OK until April 03 when I started having numbness and tingling throughout my body as well as weakness in my extremities more so in my legs. I had bladder incontinence as well. It was very scary. I was going to doctor after doctor when I was finally sent to a 3rd neurologist who immediately admitted me to the hospital and started me on high dose IV steroids, muscle relaxers and a medication to control the bladder. I was in the hospital for 2 weeks after which I was home on a steroid taper for a month. I also ended up with a spinal leak post myelogram which only intensified everything. I truly thought I would never recover. It took about 4 years to feel almost normal…I still have weakness, tingling and pain in all extremities…I still have some difficulty walking long distances and fall a lot. It is something I have to live with and I am thankful I am not paralyzed as some people end up. I feel deeply for all of you that have suffered paralysis from TM. This is definitely something no one can understand unless that have experienced it…and I do not wish this on anyone! God Bless
September 30th, 2008 at 2:28 pm
i have tm since last year, to get in touch and talk about the decease please contact me on my msn acount. To avoid spamming please derive my email address; it is marioaoun on h0tmmmail.com
November 5th, 2008 at 2:07 am
Six weeks ago, I had a procedure done to my back and 24 hours later I lost movement in my left leg, affecting my ability to urinate or deficate. over the next 24 hours I lost movement in my right leg as well. Three days later I
was given the diagnosis of TM along with the steroid therapy, of course. Still in disbelieveth, I am trying to cope. It has been and is devastating. After being diagnosed I spent the next 4 weeks in an acute inpatient rehabilation center I can now transfer myself to attend most of my basic needs. I can move my right leg from knee down by 2 out of 5. I can move my left toes only. still unable to stand. I have started to experince a great deal of spasms in my lower extremities and constant pain in my back. Numbness and tingling remains in my toes and legs.
There are some lower extremity edema, I have urinary urgency
with some incontinency. I require daily suppositories in-
sertion to stimulate my bowels. progress for me seems so very slow and at times is doubtful. There is alot that I
don’t understand about the disease process. If any one has
anything to share that I may benefit from or use as a learning tool, I will be ever so grateful.
November 25th, 2008 at 12:22 am
You have a long road ahead, and it will often be a lonely one. I was struck with TM 13 years ago while on vacation in Maine. Although I had classic symptoms, the doctors at Portland Maine Medical Center didn’t know what was wrong with me. They really pushed to give me a mental health diagnosis. Thank God for one doctor who was convinced that the problem was not mental – and had a physical cause. It ultimately led to the diagnosis of TM. There was little available information about TM, and no websites or support groups. My depression competed with my physical condition, but I am a pretty strong person. Over time, I have progressed from complete paralysis of my legs to being almost normal – on a good day. Willing to try anything that might help, I have followed a gluten free diet since March 2008, and it has seemed to help the residual numbness and tightness in one knee and leg. Good luck to you all, don’t give up, keep exploring alternative treatments, and above all, be your own advocate.
November 29th, 2008 at 5:49 pm
Hello,
I am currently an occupational therapy graduate student doing a short research paper on transverse myelitis. I have read your comments and I can only imagine what you are going through.
In my research, I found the “Transverse Myelitis Association,” (http://www.myelitis.org/) which has a “Support Groups” link on the left hand side. There are several groups depending on the area you are in.
I am no expert, but I know that a recent article by the Transverse Myelitis Consortium Working Group (2002) has defined criteria for the diagnosis of TM. They are hopeful that this more well-defined classification will help with further reaserch that is specific to TM and not TM secondary to other known diseases.
Unfortunately, access to some of the research that has been conducted is exclusive to journal subscriptions. My suggestion is to look at google scholar, which has links to legitimate articles.
I hope this was a bit helpful.
My very best to all of you.
December 4th, 2008 at 3:20 pm
I was struck with TM on November 17, 2000. It started with my right foot falling asleep, then my left, then up to my knees and then up to my thighs, finally stopping at my waist. My husband and I both thought a nice warm bath would help. I ended up going to the ER where I was treated like crap. The ER doctor gave me some xanax. He thought I had some kind of stress in my life. He even actually saw me attempt to walk to the bathroom with my husband’s help. He sent me home with muscle relaxers and told me if I wasn’t better in a couple of days that I would need to see my regular doctor. I deteriorated very quickly. I was no longer able to get myself up out of the bed. My husband took me to our dr. I saw the physicians assistant. She saw me walk and told me I needed to see a neurologist. Finally! I was taken to the hospital that monday and immediately put on steroids. I am able to walk now but tire easily. I still have problems with my legs. I am on neurontin and will be for the rest of my life. I can so relate to your story. Thank you for sharing.
December 30th, 2008 at 1:18 am
hi guys,
I have gone through this disease also.What happened and this is happened to me I am still not clear.but somehow I want to share my bad experience of this disease.It was the time of april 2007 when suddenly I got back ache in the evening I thaught this is just the pain and next day it will be fine.In the morning next day I was unable to do urine.My relatives went me to nearby hospital.After few hours in the hospital my legs got lifeless and I was unable to move.I went paralyzed.Now I got good treatment from gud doctors who diagnose this disease as transverse myelitis and give me gud treatment after six months I am now able to walk and run and doing a job as software engineer.But still there is no sense in my left half below chest.Things start from chest to toes on my left side.I am happy that I am doing something now.But still there are few problems remain by and I want to be like before.Like I am unable to control urine and motion like a normal people.This is just the baddy of second innings.Can anyone help me out to got rid of this problem
January 5th, 2009 at 3:05 pm
I got TM in June 2008 but was not diagnosed until Sept.2008 It started out as I felt a numbness in my left leg as my friend and I were walking. I teasingly said to her If I fall down don’t worry just help me out, I am having problems feeling my foot. Within days I could barely walk just shuffling around. Soon after which I started to get the banding in my chest. Then it moved to my left hand. I saw 8 different doctors trying to figure out what was wrong with me. Lucky for me I had a great general prationer who kept pushing for me finaly after tons of testing the nerosurgeon found my TM at c6 and t1. I have had the infusions and steriods and feel quite well considering. Like all of us I have my good days and well for better words other days,but I keep telling myself life could always be worse. We are still here right. Good luck to all.
February 3rd, 2009 at 1:30 pm
Hi from the U.K(3/2/09)
after 7 months of constantly changing symptoms, MRI’S x5, admittance to a neurological hospital finally diagnosed with T.M. Like a lot of you my inital symptom was a very sharp stabbing pain in my groin which was unbearable, over the next two weeks i developed parathesis in my right leg and foot with a pins and needles sensation. It took a further 2 weeks to move into my left leg.
Over the next 2 months the pins and needles moved into my lower stomach and arms.I was on steroids for 4 months.
Now it is just my feet,legs and hands affected, i am reciving hydotherapy which is wonderful, and am to be referred for reflexology.I have just started taking Amitriptyline as a painkiller and hope to return to work within the next 6 months.
Everyones experience is so valid in us all learning more about this condition,Stay positive and i would encourage people to join th T.M Association.
February 11th, 2009 at 7:09 pm
In response to Heidi’s question:
My Mother was diagnosed with TM when I as 2 weeks old, I am now almost 31. In 1978 TM was virtually unheard of. At that time only 6 people besides her had ever been diagnosed and only she and 1 other had survived. She was hospitalized for almost a year. During that time they did lots of tests and therapies with her and eventually she went from quadriplegic to paraplegic. She has always tried to figure out exactly what caused the sudden onset. The two things she says were out of the ordinary for her at the time were; 1.She received a heb-B vaccine 2 weeks prior to the occurrence and 2.She was drinking 1-2 gallons of milk per day (pregnancy craving).
This is the first time I have ever looked up TM, I had no idea so many people were suffering from it. In a round about way, I understand and wish all of you the very best of luck.
March 17th, 2009 at 7:21 pm
I was diagnosed with TM in July 2007. I had no pain befire the full onset, jsut a few times when I right leg would buckle. At first I thought it was sciatica, but soon i felt like I was dragging a 300 pound lo with me. The doctors seemed to be able to figure out what this was relatively quickly and put me on high doses of steriod. I was in 2 different hospitals for a total of 2 months. I got some rehabilitation while I was in the hospital, but due to no money and no insurance I have had to do my own rehabilitation. I find even though I can walk somewhat, my right leg is very tight and sometimes the left leg is numb and will buckle. I live in constant daily fear that TM will overtake me again and I will end up in a wheelchair for life. I have been through scoliosis, cancer and a whole host of other diseases but this one leaves me drained, tired and beaten down.
April 17th, 2009 at 4:29 pm
I wrote in Nov. 2008, and just want to update you on the issue of gluten and TM. The idea is that the inflamation produced by gluten interferes with and aggrevates nerve healing. I have been gluten free for a year. When I introduced it 3 times now, it has had different effects on my nerve endings. The 1st time was total pain and limping (after 1 1/2 months), the last time after 1 year (it was St. Patrick’s Day…) it created a feeling of warm tingling and then stiffness for a week or so. I think the nerves may be repairing themselves. I really think that there is something to this – and I was a true sceptic. Remember, 1 out of 133 people are affected with gluten problems, yet 97% go undiagnosed. It’s not an easy diet, but may be worth the effort.
May 2nd, 2009 at 1:11 pm
I believe that what the doctor’s diagosed as ‘ambulatory rheumatism’ in 1960 when I was stricken, was indeed TM. About 6 months or a year prior, I had suffered some kind of flu and became so dehydrated they finally found a vein in my ankle in which to IV me. When the TM came, the pain started in my lower left leg, went up and then down my right leg. I couldn’t walk and was in such agonizing pain that even touch was excruciating. I was rushed to the hospital in the back of my parents’ car, and was admitted. I remember using a wheelchair in the hospital as I still coul not walk, and was placed on corticosteriods which I took for about 2 years. Those probably saved my life, but I blew up like a blimp and have been fat ever since. However, that is a small price to pay since I had no trouble since and am fully functioning. My heart goes out to you all.
May 2nd, 2009 at 1:13 pm
Some additional information on my comment directly above: in 1960 I was 4 years old and living on the East Coast. I do fear possible MS in the future.
May 6th, 2009 at 12:58 pm
On April 1st 2009, my 17 year old daughter Ashle woke up with severe back pain and numbness in both of her legs. Her and a few of her friends had attended the Brittany Spears concert the night before and since it was a week day, the deal was she could go to the concert, but she would have to get up and go to school. So, when she kept complaining of back pain, I naturally assumed she was trying to get out of going to school. She got up and got dressed and as the time was nearing to leave she looked me in the eye and said that her back was killing her. I knew then she wasn’t kidding. She complained of numbness and tingling in her legs and being a firefighter/paramedic for 25 years, I associated the two complaints as some kind of pulled muscle and related to each other. I gave her a muscle relaxer that had been prescribed to me for a back injury. She took it and went back to bed. I left her home for the day while went to my part time job. My wife is a school teacher and when she got off work she called me at around 4:30pm and informed me that Ashle was still complaining of severe back pain and now she seemed to stumble when she tried to walk. My wife took her to a local hospital ER and I met them out there. The ER doctor had ordered a MRI because of the back pain and numbness. In the MRI it showed that she had a bulge disk in her low back. I had called a friend of my that happens to be a local Doctor and informed him of the symptoms. He advised that we should move her to Children’s Hospital in Dallas. Since I work for a local fire department just N. of Dallas and the ER Doctor is our Medical Director, he called our department and requested she be transferred by ambulance. We arrived at Children’s Hospital at around 11:30 pm. We sat in the ER until the next morning when we were moved up to the 7th floor. It was not until that evening at around 2:00 pm that the attending nuero physician and two resident doctors made the diagnosis that Ashle had Transverse Myelitis. The attending doctor was amazing and had treated several cases of TM during his career. Ashle was started on the anti-inflammatory medications and in the hospital for 6 days. During this time she had gone from a perfectly normal 17 year old to not being able to walk or stand. The TM had affected both of her legs, but not her bowel or bladder function. But, while on the medication she began to regain a lot strength in her left leg. By the second day she was able to use a walker to get back and forth from the bathroom. When we left the hospital she remained on the anti-inflammatory medications for another week. Upon the doctors orders she was directed to start an intense rehab process. During all of this we have met some amazing people and are thankful for all of them, but through one of our friends we were directed to an amazing rehab center that specializes in anti gravity physical therapy on a machine known as the Alter-G. For more information and maybe a rehab center near you can go http://www.alter-g.com. This machine has allowed Ashle to walk and even start running while only being 5 weeks into recovery. She is now walking on her own after graduating from a wheelchair, walker and a cane. She has maintained a great attitude and is amazing kid. We are in hopes and praying for a full recovery. We know that it want come easy, but through hard work and determination I think she will be just fine. I was truly touched by all of your stories and I hope that by sharing our story, it will help someone else. Don’t forget to give all the praise to God, and through that you will find comfort for he strengthens our soles through prayer.
May 26th, 2009 at 2:29 pm
My husband was diagnosed in Jan 2009 with meningitis and
finally after 3 months in the hospital they said it was
TM. He was just turning 51. He’s a T6 quadriplegic. He can walk with the aid of a walker but not for long because of multiple past knee surgeries. One thing different about him: he has this constant numb pain in both hands and feet. This has been very hard on him as well as myself and
our daughter. Please pray for my family.
May 30th, 2009 at 3:12 pm
Heidi – I so wish to talk to you. My son, Skylar, was diagnosed with TM at 6 months – right after getting his set of shots. We put him down for a nap and when we woke him up he couldn’t move anything from the neck down. You’re the first person I have found that has had this happen to someone they know as an infant. If it is the case with your little one that they had/have TM, I would like very much to talk to you.
Also – Does anyone know of any help out there for us? I’m a 21 year old single mother – barely making over $10/hr – and financially this is killing me, but I don’t know of any help out there for us other than SSI.
Feel free to contact me: ilovemysiamese@live.com
May 30th, 2009 at 3:13 pm
Heidi – I so wish to talk to you. My son, Skylar, was diagnosed with TM at 6 months – right after getting his set of shots. We put him down for a nap and when we woke him up he couldn’t move anything from the neck down. You’re the first person I have found that has had this happen to someone they know as an infant. If it is the case with your little one that they had/have TM, I would like very much to talk to you.
Feel free to contact me: ilovemysiamese@live.com
June 2nd, 2009 at 9:27 am
My father was stricken with this disease in 1974. Very rare at that time, no one knew at all how to treat it. He never regained his movement, remaining a C5 quad until he died in 2006.
July 10th, 2009 at 5:24 am
In July 2000 I had sudden onset TM. The areas affected on my spine were in the Thoracic Region, T1-T6. Symptoms included difficulty walking and rising from the seated positon and eventually difficulty voiding. Within hours I was unable to walk, void, sit up straight, roll over in bed and I was overwhelmed with fear. A patient was pulled out of the MRI to make room for me, ‘the emergency’. He was furious. I will never be mad again for any inconvenience due to an emergency. I was in the hospital with 1000mg. Solu-Medrol Infusion x 5 days, then taper down with oral Prednisone. I remained hospitalized for 2 weeks with intense physical and occupational therapy. I was rolled in, but I walked out, due to the diligent care and oversight of bright doctors who were committed to my care. I now care for my 30yr. old daughter who has had 3 attacks of TM within the last 2 1/2 yrs. She is bedridden much of the time and my heart goes out to her. I am certain that God permitted me to experience TM in it’s full fury so that I could be a compassionate and caring caregiver to my sweet daughter.
August 25th, 2009 at 12:21 am
I’m a TM success story. I was 44, diagnosed in March 2000, after experiencing the initial symptoms for nearly 9 days, while on the road with my business.
I certainly have to say that if I had gotten sick at home, I wouldn’t be here – but, I got sick near a good hospital, with a very savvy ER staff. Hats off to Borgess Medical in Kalamazoo, Michigan!
After the third trip to the ER with a bladder infection, plus the paralysis, the neurologist on duty asked the RIGHT questions, instead of the expected series of wrong questions from other specialities.
I got the MRI (two hours in the tube), and within twenty minutes, I was on my way to the ICU. Stayed there a week. Interesting experience, doing a physical inventory every hour, expecting improvement. And, got it. That toe twitch was a welcome sight!
They wheeled me into the physical rehab, and once I learned what exercises were required, I decided to take charge of my recovery, exercising every muscle group I needed in order to walk again – even did pushups and situps twice a day – and walked out on my own power (no canes or crutch) in a week.
Background helps. I am a Naval Officer (Active and Reserve), and have had considerable physical discipline, which steered my course, and kept me focused. And, I never did get scared – I asked questions, and stayed objective.
As I said, it happened in March of 2000. By July of that same year, I was back drilling with my unit, fully functional, able to pass a physical readiness test (includes running), and was promoted in October.
Other than not being able to fully feel temperature from the chest down (not debilitating – actually an advantage in hot weather), I was declared medically ready, and mobilized to the Persian Gulf in May 2001, mobilized to a different area January 2002, and am going out still again October of this year (2009) on another mobilization.
Guys…if it happens – to a relative, a friend, an acquantance, YOU know what’s going on…tell them: don’t screw around with enduring stupid questions at an ER – and many ER doctors don’t even know what questions to ask…tell them the neurologist needs to get involved, and TELL them it’s likely TM.
To those recovering: Positive attitude will do more for your recovery than you think. It’s not just meds.
Plus…take charge of your recovery – think ahead, during rehab – don’t wait for other people to think for you, or move for you. Yeah, being incontinent sucks – but, there are solutions (pubovaginal sling is one). Above all: Don’t whine. The more whining, the less people listen to you.
One last thing – don’t obsess about every little twinge being a recurrence…numbers support NOT getting a recurrence. That occasional body spasm (yes, I get them sometimes) – I walk it off. Really. GET ON WITH YOUR LIFE. It’s still fun. I’m living proof.
Take care.
August 25th, 2009 at 9:12 am
I am an American living in the UK for close to thirteen years. My husband and I flew to NY for a 6 day holiday. On Friday, 13 March 2009, the third day of our trip, I woke as usual, showered, fixed breakfast in our hotel room and packed our lunch for a day out. Just before leaving the hotel, I began to experience pins and needles in my bottom. We both thought it was due to so much walking the two days prior and that it would pass. Well, it did not pass – in fact it got worse. An undescribable sensation was going down my thighs as we walked to the Metro. We made it Wall Street but by then the sensation was in my calves as well. I was finding it very difficult to stand and was depending on my husband for support. He hailed a cab to take us to the nearest ER – which was St Vincent’s in Manhattan. I had to be literally dragged from taxi to ER as I had become paralyzed from the waist down – all this within 1-2 hours. In the ER, I was seen quite quickly by a neurologist who, after examining and questioning me, ordered an MRI expecting it to reveal either a herniated disc or a tumor at the base of the spine pressing on the nerves – in which case I was to expect surgery that evening. I had no bowel or bladder control and a catheter was put in place. The MRI did not show either of these. I was finally admitted to the neurology ward. Over the next 9 days, I had two further MRI’s, a cardiology team, an infectious disease team, a lumbar puncture procedure, ECG, EKG, steroids by IV, anti-viral meds, etc…. One diagnosis was MS but confirmed. All negative results from lumbar puncture. After 10 days in St Vincent’s, I was flown with a private nurse back to the UK. (Thank God for travel insurance.) Lucky for me I was accepted as a patient in The National Hospital for Neurology and Neurosurgery in London – one of the best in the world. Upon arrival in London, I was still unable to move my legs at all. An MRI was done the day I arrived which showed the damage was still active. MS was ruled out completely as my nerve damage was too low in the spine for MS and at age 58, too old. Diagnosis was made of severe TM due to a viral infection – T9 conus but involving cauda equina. (will never know what virus). I remained in this hospital for a further 7 weeks. After the first week, I was taught to use a slider board from bed to wheelchair; then progress to walking frame; then to arm crutches; and finally to walking sticks. I had 3 hours of physio and rehab each day, learning to walk, shower and dress independently. It has been a long, hard journey and I am not fully recovered yet. Each and every step is pure effort. The bottom of my bottom is still numb as are the backs of both legs and my left foot. I have pain, burning sensation in my feet 24/7. I have avoided any of the medications with dreadful side effects, i.e. Gabapentin. Just trying to get the pain to a tolerable level with Paracetamol (Tylenol). I continued private physio 3 times a week for several weeks and am now going once a week. My heart goes out to each and every fellow TM sufferer. No one else can understand just what we go through every single moment of every single day. I pray for a cure for this and more research into the causes. I am on my yellow brick road – a journey to recovery. Hope you are too.
November 7th, 2009 at 2:56 pm
Iwoke up one Sat. morning this past July + felt alittle numbness in my legs + next thing i know was in ahopital with everyone looking at me wondering what happened to me. If it was not for 1 nerologist who called the shots +put me on steroids + ordered plasmapheresis idont think i would of had a chance. iam paralized from the hips down at that time after 2 weeks in the hospital went to Good Shepard rehab for a month started with some movement came home for a month with home care, now back to rehab as an out patiant its just 3months since it happened I have lots of movement cant weight bear yet but really working hard at rehab. bladder is getting under control. I will lose my job if idont get better my Jan. but getting better is my first goal. My husband takes care of me. thanks to him i fight harder to get better.
November 16th, 2009 at 6:15 am
I had TM in 1990, and I was playing in AAA at the time for SD Padres, I went from the prime of my life to this disease, I feel sorry for all the people and their families that have had to go through this. I was very fortunate, maybe because I was in great physical shape at the time. I was flown from Las Vegas to Scripps Center in Lajolla, CA. They ran several tests, MRI, Lumbar puncture, blood, urine, all that and I had an ellavated protein level in my spinal fluid, this was the only thing that was off, otherwise I felt fine. The day of the first onset I had severe pain, I mean severe pain shooting down both my legs, felt like there was fire in my veins and then the numbess/paralysis took over, I could barely walk. I stayed in the hospital for about 30 days and then slowly got better, I have some numbness on the backside of my legs but overall I am very lucky. When this happened to me like some of you above years ago the internet wasnt here and the cases where so rare you couldnt talk to anyone that had it, I am glad I found this site, I pray and wish everyone on here the best of luck.
Jeff
November 16th, 2009 at 6:24 am
I do agree with the ex naval officer above, try to stay positive, even though I was in the hospital and not able to walk for weeks I kept telling myself that I was going to walk out of the ICU the next day, hard to tell yourself that but I slowly did get better and didnt walk out, left in a wheelchair but I can walk today, again best of luck to everyone on here as no one knows what we went through.