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!
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Curious to see the answers to this post.. I am in the same boat as you. I often wonder the same thing and finally chose not to call anymore when I have flares because I feel like if there hasnt been changes on the MRI, then I will get the same answers. It gets very confusing????
ReplyDeleteKim, I agree with you that MRIs do not tell the entire story. We can progress [negatively] and the scans may show no new lesions. Share your knowledge w/your neurologist, and she may be more hesitant to make blanket statements in the future.
ReplyDeletePeace,
Muff
In some of my resent reviewing online I came across some info that said it could be months after a flare that lesions show on an MRI. Not sure where I read it or if it is acurate, but just a thought How long after a flare was the MRI in 09?
ReplyDeleteDear fizzle,
ReplyDeleteThe 09 MRI was done six months after the flare started--and immediately following my steroid treatment for it.
As I stated in the essay, I'm very interested in the possibility of cortical grey matter damage being the suspect in our flares--an area that our MRIs will never be able to capture.
Thanks for commenting!
Kim
Muff,
ReplyDeleteThanks for that vote of confidence, I will definitely have that talk with her.
And thanks for dropping in!
Kim
Dear Kim
ReplyDeleteI hear what you say only too loud and clear and wish I had the time to 'bring it on'.
I have questioned every neurologist on what they say. Not to be rude, though in order to best understand what they are telling me.
Likewise, I have also asked them to relay what they are saying - to how this fits with what it is I am relating to them about my symptoms. I hope that made sense.
In all cases, I have sensed they feel discomfort that how dare should a patient question their expertise. Likewise, I then open their seemingly presenting discomfort to conversation. This does not improve their superior bed side manner though.
However, I realize I am not addressing your point of cortical grey matter damage being suspect in our flares (I will leave this one for another day, other then to say I am not, have not and I expect will never be convinced that new or worsening symptoms are correlated with MRI findings).
I digress sorry, as I was going to say, talk to your neurologist next time, especially in how you feel. It is critical.
People we consult work for us - we pay them. How else is it that they afford their 'planes, trains and automobiles'.
In order to gain my initial MRI I sat in the rooms of a specialist's office with them sitting across the table somewhat awkwardly to say the least. Reason being as I refused to leave until they referred me for an MRI and that if they did not they would have to carry me out of their rooms.
I received the referral and have never returned to them, nor will I. I have also never looked back on having been assertive enough to do so.
So I put it back to you, 'bring it on' with your doctor and her to 'bring it on' when you next meet. If she is not up to date with the literature, this is not your problem, it is her issue and she needs to address it.
Don't let it impact adversely on what is your right and expectation of her - namely, being provided the best and most updated medical care and attention you are paying for.
Don't compromise my sweet, don't settle for less than you deserve. That we all deserve. The best of treatment and the most informed of care.
Take care
Regards
Grace
Grace,
ReplyDeleteWell said, of course you are so right. Thanks for the pep talk--and hope you're doing okay.
Kim
Got room on board for another gimp?
ReplyDeleteI have also been told I have the same lesions as before--yet, I continue to drift downhill.
My doctor's reasoning was my decline is the body's reaction to the damage that had already occurred.
I don't ask questions anymore because there are no answers!
Doug,
ReplyDeleteTheres's always room for another gimp :)
At least your neuro had a better explanation! It makes sense that our bodies are getting zapped in the same old places where damage has already occurred.
And yeah, ultimately that isn't really very helpful. It all goes back to focusing on symptom management.
So you guys still have some grey matter left?!
ReplyDeleteOf course, given all we (I mean us, not the medical community)know about MS, it would be odd for any of us to not understand how limited our knowledge of the "Picture" of MS is. But, unlike the doctors, we know how our bodies are feeling, regardless of what the pictures say.
Thank you for the essay Kim. It was well thought out and cogently expressed.
Dave
I'm so glad I found you, Kim! This is the same thing I'm struggling with now. No new lesions in the past year, but an increase in new symptoms. My neuro's response was similar to what you said..."MS can affect the white and gray matter of the brain, but today's MRI's only have the capability to see the white matter. So it's possible there are things going on that we simply are not seeing. So, we treat you not the MRI. An increase in symptoms without an increase in lesions is still a progression of the disease." Waiting on some answers of exactly where to go from here...possibly a change in medication. Best of luck to you!
ReplyDeleteWarmest regards,
Megan
Megan! I'm glad you found me, too :)
ReplyDeleteYour neuro seems to be better informed than mine, lucky you. I did tell my neuro about the research I'd learned about concerning cortical grey matter damage. She looked a bit cowed, but I think the message got through. And yes, trying new medications is the thing to do and what I did, with good results.
Best of luck to you, too, and thanks so much for taking the time to read and comment :)
Kim