Transverse Myelitis (TM) is a rather uncommon neurological disorder in which a person is autoimmune system attacks spinal cord tissues, causing inflammation of the myelin in the back in a lateral fashion. Hence we have the use of transverse to describe the direction of the inflammation. Also myel indicates the part of spinal cord that is affected and itis at the end of a medical term indicates inflammation as the symptom. This condition seems like it would just imply negligible swelling, causing a backache maybe.
Now that is a communication pathway that cannot afford to be interrupted, right? The good news is that TM can take up to several weeks (subacute) to interrupt communication. The bad news is that it can also occur in a matter of days or hours (acute). The good news is that it can heal if damaged. The bad news is that it can take a few years to do so. But, at least there is hope, right?
NOW, WAIT ! Before you run to the Emergency Room for every little pain that is back related, let us understand it a little more, shall we?
TM can occur concurrent to or post viral and bacterial conditions, post-vaccinations, or as an offset of cancer. TM also has been seen to occur in those that have autoimmune disorders. One interesting fact is that after an infection, our bodies send out mechanisms to fight off cells that appear to be part of the original infection cause. Ironically, some infectious organisms carry cells that are similar to the cells in the myelin of the spinal cord, thus the infection causes us to attack our own bodies. Our bodies are truly fascinating in their complexity, huh?
After all of this, you will go to the Doctor and/or hospital. You get a Magnetic Resonance Imaging (MRI) done on your brain examine for lesions in the brain tissues, possibly including a dye injection to check for swelling/blood flow. You will get blood tests to check for white and red blood cell counts to detect other viral/bacterial causes and to take a snapshot of your autoimmune system. You will get some steroids as a first step to slow down your autoimmune system and stop the swelling. Larger doses may be needed if small ones do not work. Plasma therapy and surgery may be used on you as a last resort if the steroids don not help you. Then you might get sent home for bed rest for several days to several weeks.
Then, you will hopefully start recovering. You will need physical therapy, to strengthen your body again. You will possibly need vocational therapy if you are disabled post-occurrence. You might look into psychological therapy because this disorder can harm our psyche as well as our physical motor skills. From experience, please know that it is a neurological disorder that affects you as much as you let it in the aftermath.
Be strong. Stay educated. Keep your appointments to follow-up. Most importantly, be patient with yourself as you heal.
TRUE STORY: When it happened to me, I went from walking to being carried into a cab to a week stay in the hospital in roughly a 24 hour time frame. My system was in high gear fighting off a bacterial infection that required surgery. The surgery threw my system into over-drive healing the infection and healing the surgery wounds. I went home the same day, Friday, of the surgery. I recall being uncomfortable and feeling like my legs were heavy that night. Saturday, I felt weak and my legs felt like they were burning with pain and heavy all at once. By Sunday around noon, I could not walk, despite the hardest efforts and I could not use the restroom. The tightness and pain from the waist down turned into numbness. Talk about the scare of my life ! At the hospital, I had an MRI with the dye injection. I also had a spinal tap, had sensory tests and muscular tone tests, and blood tests. To slow my system down, I received steroids intravenously and orally after they diagnosed TM. Luckily, I have no post-steroids chin or chest hair and have been told I still have a wonderfully feminine voice! lol. I had equipment to assist with circulation in my legs. It was like a wonderful massage at first, but after 3 times a day, it go old. Never thought I would say that! I had to be assisted with EVERYTHING. Man, was that rough and humbling! I was bed-ridden for an entire week, which was a sentence to insanity when you can not stand hospitals. I felt like bathing in alcohol daily to ward off the germs! I did some physical therapy and finally was allowed to leave if I promised to use a walker. The way I finally saw it, it was either crawl around or do the Granny on a Walker Stint. I had a hard time making that look work at 25, let me tell you. I only moved around when necessary due to the incredible effort involved. I did the phsyical therapy (pt) exercises involved rigorously/obsessively, but opted not to do weekly pt at the hospital. I did kept up my follow-up appointments, though. I used the walker for about 5 months...and no, I did not put the yellow tennis balls on the bottom! lol. I had to stay at home for a month and slowly began returning to work, first part-time then full-time.I was fortunate that I was able to get off of the walker eventually. Physically, I am close to pre-TM, a year and a half later. The right side of my body is still "different" from the left side. My leg still has a burning painful sensation and the muscles spasm alot especially after excerise. But at least I have slowly gotten the strength and ability to jog again! My arm is heavier to me than my left and I have muscle and joint pains in it. Overall, these discomforts are just a part of who I am now. Oddly, I am thankful for them. They serve as a reminder of what could have been. I am one of the blessed ones post-TM. It was NOT easy, do not misunderstand. I cried, I cursed, I felt depressed, and I was embarrassed at times. But in the big picture, I fought it with all I had. Could it come back?Unlikely, but possible. If so, I will fight again and will always try to find some humor in it all. I firmly believe that where there is laughter, there is some hope.
Transverse Myelities Newsletters break down TM into laymen terms. Main Page for TM, a site that focuses only on TM suffers and their families. Leading source for TM. Mayo Clinic provides overview of the bacterial/viral conditions that can cause TM If you are like me, you may sometimes doubt a diagnosis and research it yourself. This site gives detailed information regarding other conditions that would seem similar to TM. (provides forum options as well). Brain Talk webring chat:This is a chat area for those with neurological disorders. MedHelp Forum: Ask a Neurosurgeon about your situation. A good way of getting an expert opinion.
MEDLIB Forum for Medical Issues:
You have to subscribe to this listserv, but it there is a list dedicated to TM and you subscribe to various list types, relating to different topics. I joined under the Medical section. Someone asked if we knew of groups that do research for TM, for example, and it went out to a list of persons interested in that sort of subject. NURSE NET ListServ:
This screen shows a message about TM however,with a subscription, one could choose what topic lists to add their email addresses to. Case Study of Transverse Myelitis:
This is a wonderful powerpoint presentation with text and x-rays and other medical imagery which follows a case from start to finish. The patient was diagnosed with TM. TM Brochure:
This brochure would be good to give out if you ever need to help someone understand transverse myelitis more thoroughly. AID PAGE SITE FOR TM:
This site is somewhat sad, but the reality is that families and those suffering from TM can find themselves in emotional/financial lows. This is a website to go to if you or (someone you know) are not too proud to say you need help.
A useful forum for those that suffer the paralyzing effects of TM (from discussing day to day topics like feeling afraid to researchs have stumbled upon).