Comments on: Sudden Onset

By: Kat

Kat — Fri, 12 Mar 2010 20:47:48 +0000

I was diagnosed with TM when I was 8 years old (I’m not 22, so 14 years ago) and none of my doctors had ever heard of it. All I remember was having trouble doing my homework (which at the time was “writing” different words and having neat handwriting) and my parents getting very frustrated with me thinking I was lazy. I also vaguely remember trying to walk down our hallway into my bedroom and I couldn’t even make it 3 feet without having to hold onto something. I was brought to the doctor that night and was joking around about wanting to go watch TV in the hospital (right next door) and the doctor looked at me and said “Well, looks like you get to watch TV, we need to get you in there right now. Can you walk?” I stood up, and fell down. After an MRI the doctors still couldn’t figure out what was going on and sent me down to the closest Children’s hospital 2 hours away. I stayed there for 3 weeks with lots of daily tests. The paralysis in my legs lasted about 1 1/2 weeks and with a lot of PT I was able to regain the strength. I’ve always been curious about how/what caused this and no one was/has been ever able to explain it to me. I am now writing a research paper for college about TM and it’s very interesting. Thank you for all of your stories.

By: sam

sam — Mon, 01 Mar 2010 11:34:50 +0000

is it Possible TM patient getting married?

By: Melissa

Melissa — Wed, 24 Feb 2010 18:02:52 +0000

I had TM, after a very bad stomach virus in July of 2009, was hospitalized for 3 1/2 weeks and could not walk cough right, urinate or have bowel movements. I left the Hospital on 8/25, still unable to fully walk, after receiving Blood Plasma IV and 2 IV steroid treatments, and entered into rehab, on 9/25/09 I left rehab, and was able to walk again. It is now six months since I left the hospital, and I am 100% again. From the onset of my TM until I was able to fully walk again was about 1 1/2 months, but everyones TM is different it depends on the severity of how it comes on and unfortunately the damage it has left behind, I fortunately did not have any damage to the Spinal cord, I beleive I was one of the lucky ones. Good Luck to you all!!!

By: Meghan

Meghan — Mon, 22 Feb 2010 02:38:05 +0000

My name is Meghan. I’m 16 have TM i got it about three and a half years ago and i had the back pain and it was the worst pain i’ve ever felt. I thought i pulled a muscle being at the beach all day. I went to bed and woke up with the morning Paralyzed from the chest down(T4). I just saw this online and i wanted to know how long you were unable to walk before you started walking again. Please Email me(:

By: sachin

sachin — Sat, 12 Dec 2009 18:54:02 +0000

My cousin got this in 1991 and his lower part of body is numb and he cannot feel temperature, etc. and it is TM. We tried every possible thing and it improves to the extent that he can walk for short distance using walking frames but it detoriates too. Physically he is not that fit.

We being in India have also tried Ayurveda (kottayam, Kerala) and it is combined with physiotherapy. I am again going back to Ayurveda alongwith meditation and hope it will help.

By: Jessica

Jessica — Sat, 05 Dec 2009 04:25:09 +0000

My nephew has TM and he got it when he was only 4 months old. So as you can guess he can’t accurately describe any of his onset of problems. The doctors here did not act fast enough to really help him either. I feel so bad for him. I pray all the time for a cure. He is so precious and sweet about it all. He is currently in physical therapy now. Hope all of you get completely well and just keep praying about this condition.

By: Margie

Margie — Mon, 23 Nov 2009 19:39:23 +0000

I was wondering if anyone could tell me if they had all kinds of movement in there legs when they had TM + can not bear weight yet. Rehab said they do not have an answer but mabe someone who had TM can. I can lift my legs laying down cross them when iam sitting ialmost want to get right up but i can not. its going on 5 months since the onset + i was paralized from the hips down. it was in the lumbar section. i am still num from the knees down sum light feeling though.

By: sylvia

sylvia — Sat, 21 Nov 2009 00:01:12 +0000

After reading so many of your experiences, Im so comforted in the knowing that not only is this terrible desease not exclusive to anyone, but for various reasons or following various events, can without warning strike.
My back was severly injured in a car accident, and no one seemed to understand why 11 month later I was still in horrific pain, and ever increasing weakness until I awakened on a Tuesday morning unable to get out of bed.I thought I would die and trust me after a months hospital stay and a Neurologist calling me crazy, They diagnosed me with TM idiopathic. They found no desease that would cause such an onset, and the continued pain and disabilities has made me many many days want to give up. I dont. I have gone from being paralized to a wheel chair to a walker and now just my cane. The pain in my back, neck and shoulders have made me scream the blood of Jesus. Sometimes I am angry, I am often afraid. My life has completely changed and even how some deal with me has, but I am alive,my husband loves me and so do my God.
May You have peace and comfort.

By: Jeff

Jeff — Mon, 16 Nov 2009 10:24:23 +0000

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.

By: Jeff

Jeff — Mon, 16 Nov 2009 10:15:35 +0000

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

By: Margie

Margie — Sat, 07 Nov 2009 18:56:24 +0000

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.

By: Peggy

Peggy — Tue, 25 Aug 2009 13:12:47 +0000

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.

By: Maggie

Maggie — Tue, 25 Aug 2009 04:21:39 +0000

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.

By: Susan

Susan — Fri, 10 Jul 2009 09:24:46 +0000

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.

By: Lee

Lee — Tue, 02 Jun 2009 13:27:19 +0000

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.

By: Kerri

Kerri — Sat, 30 May 2009 19:13:48 +0000

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

By: Kerri

Kerri — Sat, 30 May 2009 19:12:45 +0000

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

By: Shirley

Shirley — Tue, 26 May 2009 18:29:19 +0000

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.

By: Bailey Mercer

Bailey Mercer — Wed, 06 May 2009 16:58:00 +0000

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.

By: Linda Lee

Linda Lee — Sat, 02 May 2009 17:13:52 +0000

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.

By: Linda Lee

Linda Lee — Sat, 02 May 2009 17:11:31 +0000

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.

By: Karen Francini

Karen Francini — Fri, 17 Apr 2009 20:29:15 +0000

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.

By: Julie

Julie — Tue, 17 Mar 2009 23:21:23 +0000

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.

By: Tanya

Tanya — Wed, 11 Feb 2009 23:09:54 +0000

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.

By: carol preece

carol preece — Tue, 03 Feb 2009 17:30:21 +0000

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.

By: Karol

Karol — Mon, 05 Jan 2009 19:05:41 +0000

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.

By: akhil

akhil — Tue, 30 Dec 2008 05:18:46 +0000

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

By: Sherry

Sherry — Thu, 04 Dec 2008 19:20:35 +0000

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.

By: esther

esther — Sat, 29 Nov 2008 21:49:47 +0000

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.

By: Karen

Karen — Tue, 25 Nov 2008 04:22:54 +0000

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.