Transverse Myelitis and MS

[rlkrph]

OK - This is long winded, and my questions are at the bottom if you want to skip over the history part.  There just is not a lot of information on TM with underlying MS and what happens years after recovery from TM.

In October 2005 I had a major MS exacerbation which resulted in me being diagnosed with MS 6 months later.  Apparently I have had MS for 18 years, I had optic neuritis in 1990, and my MS symptoms were very mild up until the exacerbation.  The exacerbation lasted 10 weeks and included electrical back pain, various other types of neurological pain, leg numbness, balance issues, vertigo, banding, some eye issues, and the return of incontinence.  (I had previously had a bladder sling placed which worked prior to knowing I had MS.)  I have had optic neuritis twice and the transverse myelitis once, and I have not been tested for Devics.  Lupus was the other possibility mentioned when I was in the diagnosis process.  

The first two neuros I saw felt I had ADEM from the flu shot, or that I was an 'anxious female' so I never received any treatment during the exacerbation.  It took me 6 months to get in to see an exceptional MS specialist (who had to retire last year due to health issues).  When I described suddenly waking up with a very stiff back and feeling like I had a burning board strapped to my back, he felt I had transverse myelitis 6 months earlier and that it was probably due to having the human parvo virus.  He said the human parvo virus can cause bad autoimmune flares.  I received physical therapy and a TENS machine was used, and I have been relatively pain free since then.  Occasionally I will feel some pain in the area, especially if I'm tired or overheated- usually it is an electrical jolt and generalized pain which goes away.  

My new MS specialist has not been treating MS patients for that long and does not know that much about TM.    Recently, I have had some pain in the same area affected by the TM which has not gone away for at least a week.  It is the same sort of chronic back pain I had prior to having physical therapy, and Motrin doesn't really seem to help.  There is a sharp pain that I can feel if I touch my spine, in the same area affected before.  There is also some achy pain around the area in the lower back region right below my waist band, same area as before.  There hasn't been any neurological type pain and the pain came on gradually, not acutely like in 2005.  

I'm trying to decide if I need to go see my neuro or investigate other causes of back pain, or even go to a pain specialist.  I will be going to my PCP early next week, but TM is so rare that I don't think many people, including my current MS specialist, could answer my questions.

My questions are: do symptoms from transverse myelitis ever go away for good - or can they flare up years after recovery?  Since I have MS, is it likely that I will ever get TM again - like others with MS get optic neuritis more than once? If my doctors determine that my back pain is related to TM, is there a way to prevent it in the future?

Thanks so much for your time and expertise!

Lynn

[LF80s]

I had TM also and they tested me for Devic and MS but I was negative for both. I have a Viral TM due to Lymes disease. I don't know if there's flare ups with back pain or what but I have major back pain also that eased up but now it's back. Chronic back pain is horrible!!! They do need more info on TM even though it's rare!

I had my neurologist test me for Devic. So I would just request the test from him/her.

[rlkrph]

I should add that so far, 3 ANA tests have been negative.  My LP is positive for bands, a brain MRI showed 5 small lesions, one enhancing 6 months after the TM/exacerbation.  An MRI of the spine was done by an ortho to rule out spinal issues and he declared my spine was "that of a 12 year olds, better than 99% of his patients".  However, no mention was made at that time of TM even though I suspected that I had either MS or TM (or both) at the time.  I believe the exceptional MS specialist did not test me for Devics b/c of the very mild progression of the MS from 1990 until 2005.  He did wait a year before starting me on Copaxone in 2007.  

Obviously, I don't want to be treating MS if in fact I might have Devics.  Should I even be tested for Devics, and if so where would the blood test for Devics be sent?