Hi, all
Thanks for the comments.
Turns out, on the follow-up MRI--which was no different from the first and which did not involve the STIR sequence that the radiologist recommended--was normal for the c-spine. I'm told that the two places where the first MRI indicated hyperintensities concerning for MS were artifacts. The neurologist where I am now condescendingly told me "That is good news." Like I don't know that. I hope people like that never find themselves in a situation of experiencing a debilitating progressive condition with no name and no treatment and having this complex feeling of wanting to be able to something for it while always, of course, not actually *wishing* that it were something in particular. I don't really care what it is; I just want it to go away.
Of course, I have questions--like, how can two separate places in the cord have these hyperintensities and both be artifacts, and how is it that the *exact* places where they are happen to be the exact places that fit with my symptoms ... and why they say that the STIR sequence is *not* recommended for spinal cord when all of the literature says otherwise ... etc.
I'm angry, again. No one can do anything, and meanwhile, I find myself increasingly losing energy and mobility and having to wrap my workdays and life around both without any clinical support whatsoever. It *****.
Bio
Hey, bio, I remember you! You remember me? Same six years; we've got to stop meeting like this!
I was thinking of you the other day as I was reading an old thread - it's good to see you but of course not in this manner. i know nothing about navigating the Kaiser system, so good luck with that one.
I hope you are going to finally get some answers, and I'm with Ess that PPMS for you has always sounded like the frontrunner. Let us know the next steps, ok?
Laura
Hi, Bio! Nice to see you again, though not under these circumstances, of course.
I had categorized you in my mind as being definite PPMS, so am surprised that the question is still open. The doctor who called the cervical lesions 'incidental' findings is a total dimwit. Didn't he have access to your records, or hasn't he been told, that MS was/is a strong possibility?
I've never heard anything good about Kaiser. I hope you turn out to be the exceptional patient, at least exceptional to my knowledge, who has a positive experience and an accurate diagnosis. As to getting any and all records, you are an extremely smart cookie, and know how to put pressure in the right places to achieve this. Just too bad you have to go to so much trouble when you have enough on your plate as it is.
One last thought---I may not be remembering this correctly, but I believe that spinal cord lesions, especially a lot of them with relatively few in the brain, is a hallmark of PPMS.
Good luck with all of this, and let us know, please.
ess
Hi.
I don't understand their resistance to giving you your information, but I hope that things will go well for you when you have your imaging done. Maybe there will be something that will get you closer to the right diagnosis and better care.