Recently I received the results of my latest MRIs. The nurse called me to discuss them and relayed a message from my neurologist that went something like this: "No new lesions--that's good! Your recent symptoms are not MS-related. See your PCP for follow-up."
Huh? I was stunned by her assessment. I have been suffering from worsened neuropathic pain and increased spasticity, and she has been treating me for those symptoms with great success.
My first thought was: What would my PCP do for me? Treat the symptoms similarly and give me a PT order I can't use because the increased dose of Baclofen I'm taking makes me so weak I have to use a shower chair and can't walk through a small grocery store without sitting on a shelf in the dairy case to rest.
My second thought was that I need to educate her on how my disease has acted. I had a very long and permanently disabling flare back in '09 that rendered me unable to walk without a cane and which required me to start taking meds for spastic bladder and limb spasticity--and there were no new lesions on those MRIs.
Last year's MRIs showed four times more brain lesions than I had in '09--but with no accompanying symptoms.
Last July I was treated for a flare and returned to baseline. I had a couple of good months, then the pain and spasticity worsened--and that brings us to this most recent set of MRIs: No new lesions.
This is how it goes with MS. Shall I elaborate on this when I see her in late February? I assume she reads the same studies I do. There are studies being done right now using high-powered 7T and 9.5T machines that are picking up cortical grey matter damage seen previously only during autopsies of old MS patients whose brains were sliced up and analyzed. These findings made scientists conclude that cortical damage only occurred in the late stages of the disease. Now, these high-powered experimental MR magnets are catching lots of cortical grey matter damage in younger patients early in the disease course.
Another study being done in Miami by Dr. Jeffrey Horstmyer uses 3T machines that employ double inversion recovery sequencing that also picks up cortical grey matter damage. This sequencing program can be incorporated into our 3T machines--but it would be costly and require special training for techs and radiologists to use and to read them.
In addition, that 1.5T machine used for my MRIs wouldn't pick up very small, scattered areas of inflammation.
So, MRIs don't tell the whole story. Who knows what's going on in there!
I don't want to patronize my neurologist--but I must refute her conclusion somehow. I don't know whether she's really trying to bounce me back to the PCP because she simply doesn't know what to think--or whether she's just very conservative and isn't keeping up on her reading.
How does your disease act? Do you often have flares without new lesions? Or develop new lesions without any clinical presentation? How does your neuro react to these findings?
I welcome your feedback on this one. So, bring it on!