I keep forgetting to write about my last Magnetic resonance imaging (MRI) results probably because they are the good/bad type. Good that nothing in the brain has changed in two years! Still numerous lesion but no new ones. I have been to enough talks and seen enough charts and graphs to understand that in secondary progressive (SPMS) or let us just say a progression from relapsing remitting ms (RRMS) the lesion load stops gaining while disability levels go up based on Expanded Disability Status Scale (EDSS).
The baffling portion was the results from the spinal MRI. I did get a copy of the MRI scans and the radiologist’s initial reports. I spent a lot of time squinting blowing up the spine series pictures and scratching my head. In my previous MRI, the spine was full of lesions. They were obvious. No real techno knowledge needed they were obviously there.
This time I could not see them. The radiologist report said “no imaging findings of demyelinating disease in the cervical spine”. I am not imagining this woo hoo. However, if this is so then. …
That said I did spend a few days in a state of bliss where I allowed myself the belief that the MS was going away. That was in October. On December 1, I had an appointment with my Neurologist. We went over the MRI results. I like my neurologist she is one of those Dr.’s that is not afraid to admit an error or when she is as confused as I am LOL.
She told me that she had taken my brain MRI to the other neurologists and they all agreed that the lesions in my brain were MS lesions and with my medical history, I had MS. Umm I am thinking I thought this was settled a few years ago. When I asked about the spinal lesions not being there she thought that the original MRI might have been flawed something about artifacts. I just looked at her and said – but they were there, lots of them, in different series- how can that be? She admitted it made no sense and that was why she had taken my records to the other neurologists.
Therefore, I came home with the reaffirmation that yeah you still got MS dingbat. Bummer.
The next day I received an email from my neurologist . … since I was also mystified (wow, my neuro. is mystified) … cervical spine MRI images. … presented both of them at neuroradiology conference . … the lesions on the first MRI were real and not artifactual and the lesions disappeared on the second MRI . …
It then went on to say they agreed that spinal lesions generally do not disappear like brain lesions sometimes do but that once in awhile it happens like in my case.
I emailed her back after researching more and asked for clarification about how lesions are picked up on MRI:
“If I have this right there are 3 types of lesions. Active – seen using the contrast dye , in the process of healing lesions with high water content shown on MRI, and then missing/disappeared lesions. If spine lesions don’t usually show dye and the fatty myelin is replaced/fixed the MRI no longer measures high water content so does not show but some damage is still there from when myelin was missing but is not measurable?’
Response:
You’re correct as to the 3 types of lesions.
“so does not show but some damage is still there from when myelin was missing but is not measurable?” – that’s what we think.
I am going with Remylenation but I gotta wonder – maybe MS is the catch all when they can not figure anything else out.
I have gone from your faking it, your depressed, you have lupus, you do not have MS, you have MS, your RRMS, your SPMS, your lesions were fake, your lesions were real, your lesions are gone . … along with tests that showed I should not be walking, my eye sees better than it should . …
Good grief. I am glad I trust my neuro. And always being the work it while you can type I got my request to test for Lyme disease granted. It is the only differential that has not been ruled out – so what the heck!
Good to have a Neuro you trust. I really appreciate the docs that admit they’re confused or don’t know.
Bizarre about the spinal lesions. Seems that this neuro stuff is so nebulous — I relate to the list.
Lyme was tossed around a bit for me at the beginning but I just had the basic first-level blood test. I know that there are many types of tests with supposedly frequent false negatives for the easier more common ones. Do you know what type they’ll be doing for you?
No i do not know what type kaiser does not like to run the test so when she said OK I was like yipee one more thing to rule out for sure anyways although the test is wonky in itself.
Ya…makes you wonder huh? I’ve been told…MS- nope, lupus yes- but not systemic, fibromyalgia- yep but that doesn’t cause brain lesions, Myalgic Encephalomyelitis- maybe or not, MS- yep for sure this time, Lyme- yes definitely-maybe not MS then?- nope, it is MS and Lyme, oh no wrong again- maybe no Lyme, just MS.
For now anyway, I have been told I have RRMS, Discoid Lupus, Fibromyalgia and I am being retested for Lyme (for the 3rd time)!
Maybe they should test us for Distemper…ya, I know it’s a dog disease, but you never know 😉
Cheers
yeah I have been MS for two or so years and Secondary off and on LOL
Hey if people cuddle their dogs when it is cold and let them in more than in warmer areas maybe the distemper would kind of fit?
Crazy is it not?
Yow!At your age I had a spontaneous remission from lymphomatoid granulomatosis, another autoimmune disorder… maybe you are getting your walking papers.
Augh another Epstein Barr virus tie to the deal.
I could accept walking papers yah that would so work!
Yeah , I wondered if you’d pick up on the ebv connection… and remember… remission! Time to find remyl or a cure for ebv. Yeah!
How about the genes that are turned on and off with vitamin D?
remylenation – Go oligadendrocytes go!
I have trouble keeping track of all my crackpot theories. Pseudoscience is hard on my lesions!
hypotheses to be refuted?
i’m so confused! LOL
you guys are throwing me for big ol loops here….. this whole MS thing is nutso. I only have 5 lesions in my brain…and none on my spine. LP was positive for those band thingys that made it a definite for me…. but maybe not??? Argh!? LOL
I’m glad your spine lesions disappeared…. I didn’t know they could do that but am glad to know that lesions can go away… I thought that whatever damage I had, well that’s it and the name of the game was preventing further damage….
Gotta get on the research wagon here…. I have so much to learn!!!!
LOL
Welcome. Your personal toilet seat cover idea the ass gasket post had me giggling.
The whole deal is nutso – yes that is a good word to describe.
remyelination does happen.
I do not get it – not at all really.
It is an odd duck that spinal ones would totally dissappear. Hence all the nutso stuff.
I guess if the brain ones all dissappear and I get no new ones the S@#t would be on.
My reports now say numerous lesions in the brain – I read they are not gonna count them . …
Lesions, bands, attacks over time and space – ugh oh =MS
I so wish there were answers good grief we have a disease that they do not know what causes it, do not know how it will affect us, and have not a clue how to cure it. Umm
It sucks.
In October, my neuro said he wouldn’t mind seeing another MRI of me, seeing as I was dropping the Copaxone. I told him I’d think about it. But I have only ever had one MRI, and that was between Avonex and Copaxone – so it didn’t even count as a proper baseline. At this point I don’t see the point in having a picture of my CNS. He’d probably just order a brain MRI and I know that many of my problems are spinal in origin. I just don’t need to know the extent of the damage. You know?
I go for MRIs because I like looking at the pictures. The technical aspect of the imaging interests me. Otherwise I would not go into the tube no way no how.
Since I have said no to DMD’s seeing if they work or not is non applicable. My major lesion load was in the spine. Lots of them up in the ole nogin too but maybe I can wish them away, away, all the way gone.
There really is not a strong correlation between active lesions and EDSS scores but then again there is a reduction in inflamatory events in secondary progressive.
now if only my ON would go the freak away!!! I do get not wanting to know. If it had come back that my spine lesions multiplied I would be bed ridden by now.