Cervical lesions

[biowham]

Hi, all--

Some folks might remember me. I won't repeat my diagnostic saga, which began in 2008. In that time, they've ID'd some spots in my brain and one thoracic cord lesion. What I have has been a progressive condition that essentially reflects myelopathy of some kind. One neurologist who spent 2.5 days evaluating me concluded possible primary progressive MS, but that's never been shifted to "positive." I've gotten an assortment of "diagnoses" ranging from "it's in your head" to restless leg to PPMS.

A few weeks ago, I developed this really horrible pain/spasm thing in my neck/shoulder/arm. Many drugs later, including a course of prednisone, the pain is gone, but the spasms and paresthesias are intense. So, they sent me for a cervical MRI to check for radiculopathy. I do have some bone spurs, but nothing impinging on the cord. The doctor who called (I'm in the Kaiser system and pretty new to it) said, "Oh, and there's this incidental finding..." And after he hemmed and hawed for a little while, he told me that the finding is multiple foci of T2 hyperintensities in the cervical cord that the reader says are "concerning for demyelinating disease."

Ya think?

They're sending me for gad MRI--which I think is kind of weird, but anyway. And here's a fun thing: He would only send me (via Kaiser email) the two summary sentences from the MRI report. He won't send me the entire thing--says these aren't the 'best studies' for these issues and that I should wait for the new MRI (the gad-enhanced). Really? Not happy about that refusal to send me the complete report on my *own data*. Kaiser doesn't make it easy to get the reports, either--in fact, they put up more barriers to getting the report and the CD than any system I've encountered so far.

Anyway ... an update, now that I'm in year 6 of this process.

Bio

[biowham]

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

[PastorDan]

Hey, bio, I remember you!  You remember me?  Same six years; we've got to stop meeting like this!

[Lulu54]

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

[essdipity]

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

[Invida]

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.