Acute Transverse Myelitis

4/9/2014

Question: I do not have MS but I have (had?) Acute Transverse Myelitis in 1977. It is now 37 years later and I am curious if any of you are seeing TM patients with symptoms simiiar to Post Polio Syndrome? I have been out of work now for 2 years after fairly sudden onset of fatigue, joint pain (mostly knees and hips so below level of injury) and muscle weakness. It is absolutely not just aging out of a skeleton that may have been off kilter for all of these years.

Answer: Acute transverse myelitis (TM) is an inflammatory condition confined to the spinal cord, often associated with a recent viral infection, and often occurring in young individuals like yourself at the age of 19. The hallmark symptoms are acute (hours to a few days) to subacute (1 to 4 weeks) onset and progression of back pain, weakness and sensory loss below the level of spinal cord involvement, and loss of bowel and bladder function.

It follows the rule of, “thirds” with 1/3 experiencing near complete recovery, 1/3 partial recovery and 1/3 with little recovery. The condition rarely reoccurs and people rarely develop Multiple Sclerosis. There are alternative conditions to exclude, but this is a straightforward matter in most cases. Depending on the degree of residual problems, it is not uncommon to observe worsening symptoms later in life. The worsening symptoms and function may be related to secondary problems such as the development of arthritis, scoliosis or contractors or may be related to what the questioner referred to as “post-Polio” phenomenon.

By this we mean that the nervous system has a limited capacity to compensate for injury and respond to stress; this capacity may be overwhelmed with time and lead to accelerated aging or neurodegeration of pathways that previously were responsible for recovery. All individuals with significant residual symptoms and problems from TM (or any other neurological condition) should undergo periodic reevaluation (at least every few years) by someone with expertise in neurorehabilitation to ensure adequate adaption and recovery ensues and to prevent or manage secondary complications that arise over time.

An excellent source of information is The Transverse Myelitis Association (myelitis.org)

Rip Kinkel, MD

PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.

Alicia Smith

4/11/2014 12:44:54 pm

Dr Kinkel
I cannot thank you enough for your quick response. TM is a lonely disorder as is, but in 1977 all I had was the definition in the Merck Manual. No patient education, no internet, no wonderful sites like this! Sadly I do not believe that the definition in the Merck has changed all these years. I did go on to have a very satisfying nursing career even tho I was in the 1/3 partial recovery group. I have yet to meet a TM specialist, i was told I was one of the lucky ones and accepted the damage left behind. And it sure beat paralysis. I have spent the past two years searching for treatments to help reduce my pain. I have tried them all, my most recent being LDN. I will say that although my pain has not improved as yet, my neurogenic bladder is the best its been in 30 years. Thanks again for your quick response, I have searched and searched the lit but have not been able to find any long term f/u on the TM population
All the Best, Alicia

4/12/2014 04:35:49 am

Dr Kinkel
I just want to thank you once again as you at least confirmed what I knew to be true all along. I am being treated symptomatically although I know that my HCP is not convinced that my symptoms are related to the TM.
By chance or design, I was going to a 12pm appointment in Newburyport MA today and noticed probably a couple hundred people walking in the street. I eventually passed by someone carrying a sign, something about MS! I pulled over and asked a woman if they were walking for MS and yes they were! I literally never travel with cash but I remembered seeing a $20 dollar bill in one of those zippered pockets. Well I was in tears already but found 108 dollars in that pocket! The woman was so grateful, her team had raised over 10,000 dollars for the cause. And I did not mention in my original question that my younger brother has MS. That $108 dollars felt like a bargain for my free consult. Thanks again, Alicia Smith

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