Christopher Leighton (by way of James Lubin <jlubin(AT)eskimo.com>) wrote:
Hello all again,
Decided to put forth my thoughts once again. I put forth my story last year, almost a year to the day. Last year I spent Canadian Thanksgiving in the hospital with severe disability while my family gathered for dinner. Today I will be able to join them. If you recall I am the Canadian physician who actually treats cancer of the nervous system. To my dismay, I was struck with this horrible illness last fall. I'll update my progress and share with you what I have learned about this rare disorder over the past year. I am fortunate that I am able to read and understand the medical literature, however, let me reassure you that there is little useful to be gained from this endeavour at present.
I was hemiplegic for about a week then strength in my left leg slowly improved. Intermittent neck and back pain, as well as diffuse muscle spasms have been the bane of my existence this past year. I exercised in the fall and was able to return to work in January. It was a very busy year in the cancer clinic. By July I had become exhausted and reduced my hours. Repeat MRI studies showed a small syrinx (a fluid filled cavitity in the spinal cord....possible a result of inflammation from last fall). Unfortunately I have had two 'mini-relapses'. The most severe was last week. I had a recurrence of pain, leg weakness, urinary frequency, and autonomic disturbance (rapid heart rate, nausea, temperature fluctuations). I am on Prednisone -- I believe it has helped me considerably. I am about to have another MRI and also see a rheumatologist to rule out lupus. I have seen another neurologist who basically confirmed the initial diagnosis of TM or acute post-viral encephalomyelitis. I am off work again which is most distressing after spending 12 years of post-graduate training....I hate going to work when my patients look better than I (though I should be grateful for that also!). Hopefully will be back part-time within a week or two.
Medications I have tried: Tylenol #3, Valium 2.5 mg, Dantrolene, Baclofen
Medications that work for me: Tylenol#3, Valium 2.5 mg
Medication that I can't tolerate: Dantrolene (it caused generalized weakness to the point I could barely walk)
First, I would be interested to know if anyone has had a syrinx or syringomyelia associated with the condition?
Second, have others had periods of 'recurrences' without progression to MS. Obviously, for me, this is the next question to address...the more relapses, I have the more this diagnosis would apply.
With respect to TM: I am not surprised that many neurologists have not treated this condition....it is very rare at about 1 per million. MS is much more common. What is more important than your neurologist having treated someone else with the condition is that he/she understands the condition, the disability, its profound impact on the quality of life, and how to manage symptoms. There are no right or wrong answers to the use of steroids...it is quite reasonable for short duration therapy in moderate to severe cases....chronic use would not be a good idea in the absence of good medical evidence. It's use in MS is proven and it is reasonable to extrapolate it's use for other demyelinating conditions. It is important your neurologist evaluate you for other associated conditions that may exacerbate your condition like collagen vascular disease (lupus) or immune disorders.
It is clear from reading the individual stories in this newsgroup that ATM represents a heterogenous group of focal demyelinating spinal cord disease. It is unlike MS in that symptoms/signs remain confined to the initial site of inflammation/demyelination. These may abate and worsen -- some have identified triggers such as vigourous activity, viral illness, change in weather etc. We know little about why people get this disorder (apart from a misfiring of the immune system) nor do we understand why some people are more severely disabled than others. Hopefully new agents that can modify immune response without turning off the body's defense to infection will provide more effective treatment. No, I don't know if any such agents are being tested at present (.
ATM may be the first sign of MS however, overall, it would seem the likelihood of progression to MS is low for most.
Best of luck to all of you,
Chris Leighton MD
Windsor, Ontario CANADA