no answers in follow-up MRI results

[illinwithoutacause]

hello,

i got a call from my 2nd opinion neurologist late yesterday afternoon to discuss an MRI w/contrast i had done as a follow-up to a scan performed on 2/1 which revealed c-spine inflammation on the anterior cord and "possible myelitis."  i don't have the report in hand yet, but the doctor told me that this follow-up MRI w/contrast revealed that my t-spine is perfectly clear and that my c-spine showed only a 1mm signal which did not enhance from the contrast fluid.  the neuro-radiologist said it did not present as evidence of demyelination, but is merely a normal variation in my spinal column.  the doctor concluded the call by saying that given these results, my normal OCT and VEP tests and normal 2/10/10 brain MRI w/ contrast that he does not feel the need to pursue a lumbar puncture or further MS diagnostic testing at this point in time.

i was a bit surprised by the phone call so i wasn't prepared with questions at the time, but i have a bunch of them now that i am going to fax to my doctor.  i really do want to feel happy about this, but i am still feeling a bit apprehensive since i still don't have an explanation for all of my symptoms.  mostly i wonder why did the scan in february show 4 levels of inflammation and this one didn't show nearly as much?

anyway, i am still in limboland, and it's back to the rheumatologist  for the time being to discuss my lip biopsy and probable sjögren's findings.  i appreciate everyone's support on this board.  you are all a bunch of amazingly kind, supportive and wise people.

best wishes to you all,
binx

[illinwithoutacause]

dear mike & bio,

thanks so much for your responses.  

mike:  yes, it certainly is a tough place to be, but i know what good company i keep here, which makes it a heck of a lot easier.  i hope this finds you doing well in this next phase of your own journey.

bio:  i sent my questions to the 2nd opinion neuro yesterday and hope to hear from him soon.

my first neuro did an LP in december '09 to rule out CNS vasculitis, but didn't run an MS panel since he was so convinced i didn't have it, and he talked me out of having it done since it would worsen my headache.  then 6 weeks later, he orders the c-spine MRI to check my herniated disc and calls me 2 days later to tell me i probably have MS.  he told me he was going to come do an LP during my 3-day IV steroid infusion, but he never did and didn't even call to let me know.  that's when i decided to get a 2nd opinion at the nearby world-class university medical center and not look back.

my rheumatologist has felt all along that i have been dealing with a more systemic process than MS, but said it could possibly be overlapping, so i have been screened for lupus and a host of other autoimmune disorders.  it appears that sjögren's is the most likely possibility based on my positive lip biopsy.  i actually see my rheumy tomorrow morning, so we'll see where we go from here.

i'll let you know how it goes.

thanks so much for your support.

best wishes,
binx

[biowham]

Binx...sounds like your neuro found himself faced with something more complex than a clear yes or no...and punted it. Your questions are absolutely legitimate, and I hope you get some answers. Has anyone looked into lupus for you? It's possible to have neg ANA, etc., but if you've got Sjogrens and cord inflammation, might be worth asking your rheum about. I'd also ask that neuro of yours (or your second opinion neuro, whom I recommend you find and see) about why, with an MRI showing cord inflammation, one would not do a spinal tap?

Bio

[Mike_Shuswap]

Hey binx, I just wanted to say keep on keepin' on. Limboland's a tough place to be.

I hope you get answers at your next rheumy appt.

Keep smiling...

Mike