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Things you probably don’t know about transverse myelitis

By 2012-09-01Uncategorized

Not that I would expect anyone to know a whole lot about transverse myelitis, but here is more information on the spinal inflammation that I have and why I walk with a cane these days.

By Kevin Weilacher

1. It is a cousin disorder to Multiple Sclerosis. http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/project_restore/conditions/

2. Fairly rare disorder, only 2-5 people per million get it. http://www.ncbi.nlm.nih.gov/pubmed/8489410?dopt=Abstract http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3400871/

“The incidence of ATM is between 1 to 8 per million populations in one year.”

3. Approx. 1400 new cases a year in the U.S. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

4. Roughly 33,000 people with TM in U.S. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

5. Transverse myelitis occurs in adults and children, in both genders, and in all
races. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

6. Can be Acute (happening within hours) or Subacute (happening within days or weeks)

7. The inflammation that causes such extensive damage to nerve fibers of the spinal cord may result from viral infections, abnormal immune reactions, or insufficient blood flow through the blood vessels located in the spinal cord.
Transverse myelitis also may occur as a complication of syphilis, measles, Lyme disease, and some vaccinations, including those for chickenpox and rabies.

8. Can be Idiopathic (no known cause)

9. Typically a one time occurrence but there are some that have recurrent TM.

10. 10% or better possibility of developing Multiple Sclerosis but the possibility is fairly low if there is a normal brain MRI at TM onset…http://www.ncbi.nlm.nih.gov/pubmed/18080852

11.Most symptoms of TM are identical to MS

12.Prevailing difference between TM and MS is that lesions are on spinal nerve in TM and on Brain in MS.

13.Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.

14. The inflammation and lesion created, is caused by the bodies own immune system attacking the myelin coating of the spinal nerve.

15.The segment of the spinal cord at which the damage occurs determines which parts of the body are affected. Nerves in the cervical (neck) region control signals to the neck, arms, hands, and muscles of breathing (the diaphragm). Nerves in the thoracic (upper back) region relay signals to the torso and some parts of the arms. Nerves at the lumbar (mid-back) level control signals to the hips and legs. Finally, sacral nerves, located within the lowest segment of the spinal cord, relay signals to the groin, toes, and some parts of the legs. Damage at one segment will affect function at that segment and segments below it. In patients with transverse myelitis, demyelination usually occurs at the thoracic level, causing problems with leg movement and bowel and bladder control, which require signals from the lower segments of the spinal cord. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

16.About one-third of people affected with transverse myelitis experience good or full recovery from their symptoms; they regain the ability to walk normally and experience minimal urinary or bowel effects and paresthesias. Another one-third show only fair recovery and are left with significant deficits such as
spastic gait, sensory dysfunction, and prominent urinary urgency or incontinence. The remaining one-third show no recovery at all, remaining wheelchair-bound or bedridden with marked dependence on others for basic functions of daily living. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

17. Four classic features of transverse myelitis emerge: (1) weakness of the legs and arms, (2) pain, (3) sensory alteration, and (4) bowel and bladder dysfunction. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

18. Pain is the primary presenting symptom of transverse myelitis in approximately one-third to one-half of all patients. The pain may be localized in the lower back or may consist of sharp, shooting sensations that radiate down the legs or arms or around the torso. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

19. Patients who experience sensory disturbances often use terms such as numbness, tingling, coldness, or burning to describe their symptoms.

20. Up to 80 percent of those with transverse myelitis report areas of heightened sensitivity to touch, such that clothing or a light touch with a finger causes significant discomfort or pain (a condition called allodynia).

21.Many also experience heightened sensitivity to changes in temperature or to extreme heat or cold.

22.Bladder and bowel problems may involve increased frequency of the urge to urinate or have bowel movements, incontinence, difficulty voiding, the sensation of incomplete evacuation, and constipation.

23. Body temperature of those with TM is typically lower than a normal person.

24. Most people with TM have poor circulation even if paralysis is limited.

25.It is often difficult to distinguish between a patient with an idiopathic form of transverse myelitis and one who has an underlying condition, therefore the diagnosis is often delayed, sometimes for months or years.

26.Depression is extremely prevalent in patients with TM. http://www.brainandspine.org.uk/information/publications/brain_and_spine_booklets/transverse_myelitis/longer_term.html

27.Diagnosed with a neurological examination, MRI of the spinal cord and brain, a spinal tap, evoked potentials, blood tests to rule out potential conditions that mimic TM (vitamin B12 deficiency, lyme’s disease) and causes such as viruses and autoimmune diseases. http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm

28. Physicians also may perform myelography, which involves injecting a dye into the sac that surrounds the spinal cord. The patient is then tilted up and down to let the dye flow around and outline the spinal cord while X-rays are taken.

29.No effective cure currently exists for people with transverse myelitis

30.Treatments are designed to manage and alleviate symptoms and largely depend upon the severity of neurological involvement.

31. Stem Cell research is currently the only hope for a cure for TM.

32.Transverse Myelitis is sometimes a “But you don’t look sick” condition.

33. Ringing in the ears (Tinnitus) is very common in neurological disorders..ie:MS, TM, Migraines…. http://uprightdoctor.wordpress.com/2011/01/16/chiari-malformations-and-cranial-nerves/

34. Extreme fatigue is a common occurrence in those with Transverse Myelitis. http://www.brainandspine.org.uk/information/publications/brain_and_spine_booklets/transverse_myelitis/longer_term.html

35. Transverse Myelitis can possibly affect only one side of the body if the TM has been brought on by an onset of Multiple Sclerosis. http://rarediseases.info.nih.gov/GARD/Condition/7796/QnA/22164/Transverse_myelitis.aspx

  • Kevin D

    Thanks for posting this here…..
    Kevin Weilacher

  • Dprince

    Thanks Kevin! Could not have written it better myself! I put it on my FB page to better inform people. The more people that are informed the more doctors won’t be surprised and mis-diagnose like I was at first.