Hi all, well, some time has passed since I saw the specialist and I'd love some feedback on what's happened in my case - and possibly many of you have had similar experiences.
I saw the MS specialist in Feb and he said my LP showed "no proteins" and "no O-bands". I followed up with my regular neurologist who basically read me the letter written by the MS specialist, though I'd certainly have hoped he'd also looked at the lab report for the LP! Anyway, this neurologist concurred with the specialist that I did *not* have MS. But read on!
Well, long story short, I ended up seeing my primary care doctor today, a family practitioner and she asked, "whatever happened with your spinal?" I told her it all came back normal, and she dug through the paper work in my file, and said, "Really? Who told you that?" And I told her what the MS specialist had said, and then she showed me the lab report - which she said is a typical format with this lab and is confusing, because at first it reads:
NO BANDS then beneath that it says there are "5 distinct bands that are not present in the patient's corresponding serum sample. These bands indicate abnormal synthesis of gammaglobulins in the central nervous system. This finding is supportive of multiple sclerosis..." (and to interpret the data with other clinical findings.) Btw, I had two MRIs which show 6 lesions in the brain.
So my PCP calls the general neurologist, reads this to him over the phone, and he says he's ready to make a diagnosis of MS and to send me over for an appointment and we'll decide on a course of treatment. But after that call, she decides to call the MS specialist, and he tells her the findings do not indicate MS at all, that I do not meet the McDonald criteria, and when she asks about the bands, he insists that there were "no proteins" (even though she explained about the confusing nature of the lab's format for the report), he inisisted I don't have MS.
So, after those two calls, the PCP feels very uncertain with these two neurologists disagreeing with each other and I'm in major shock and disbelief, because I was told in February I definitely don't have MS!!! :
Well, because I have an HMO I have to go back to the neurologist who (by now even my PCP doesn't trust) that wants to put me on copaxone, but I want to ask him to send me to a 3rd neurologist - not back to the specialist who must have misread my lab
-- for a 3rd opinion!
sorry to be so long-winded, but does this CSF finding sound like a positive finding to you folks? Has anyone had the experience of having a neurologist misread their lab then not want to cop to the mistake?
With 5 O-bands and 6 brain lesions, doesn't that sound like I meet the McDonald criteria? Is it possible to have O-bands but no proteins?
Sorry, again for the length of this post, but these doctors don't inspire my confidence! Thank the angels for my PCP because I'd never have found this out without her double checking my lab for herself!