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Managing Transverse Myelitis

Apr 03, 2017 4:07 PM

Hi everyone, I'm new to the forum, but have been looking at peoples advice and stories since I got the app a year or so ago.
In my early fifties, I have had to finish my career early due to an onset of transverse myelitis. It makes moving around difficult, and the pain, as for many here, has been difficult to manage. I have an excellent pain consultant who I see every few months, who introduced me to butrans patches which have been a life changer. Managing the cocktail of other drugs is not always easy, and as lots of people here understand, the pain is not easy to predict. Relapses happen at the most unexpected times, and then when I have been particularly taxed by some activity, I may have no extra symptoms at all. Saying all of this, though, the changes that my wife and I have had to make are becoming part of our new lives, and distractions like rediscovering my artistic side have been so good for the soul.
I haven't noticed a great deal of discussion around TM, but would like to hear from anyone managing the condition, and the physical and mental impacts that it provokes. I really respect the warmth and support that I can see in the forum, and hope that I can also offer insights from my own experience. I'm in the UK and have had the condition for 3 or 4 years now. Look forward to hearing from other members.

Apr 19, 2017 8:04 PM

Hi GreyDestroyer,
I have TM too. I just now downloaded this app and immediately searched transverse myelitis and found you.

I am 31 and have had this for a year and a half now- lesion on c2 and now speculating about a new lesion due to crazy stuff happening with hips back and legs. Still mobile, but in pain frequently. How did u discover your lesion?

May 07, 2017 3:00 PM

Hi JackieVt,sorry it's taken a little time to reply. It started for me as a gradual increase in pain in my right hip, and I joked at work that I might need a hip replacement. X-ray showed a healthy hip, my doc sent me for physio, which just seemed to antagonise it. When the physio gave me acupuncture, I hit the roof, the pain was incredible, she hit a nerve bundle that was clearly not good. The pain spread over the next couple of months to my right side, numbness in my feet and hands, I was tired all the time and exhausted. I saw a neurologist who recognised the symptoms and after scans and neural pathway tests, was able to diagnose TM. The nerves are sending the wrong signals, what feels hot can be icy cold, the lightest of touches like being burnt, and so on. The consultant says a number of lesions, some damage at base of brain too. No definite idea of how it came about, but I did contract Lymes disease about 10 years previously which left me vulnerable to spinal and neurological disorders. Your patterns of pain look similar to those that I experience. How you managing things?

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