Great MRI! Phone conf. with doc in a bit - any sugg. or input for what to ask?
 

Hey everyone!

I just had my latest MRI on Wednesday and got my FABULOUS results today. No progression (one full year now - no DMD's for last 8 months), and some of the lesions have shrunk! I'm about to have a phone conference with the specialist and I have so many questions. But I was wondering if you all could think of any other questions that I should ask.

To sum up my history:
March/April 2008 - SX: tingling fingers, ocular migranes. Went to first neuro. Had brain MRI w/ and w/o contrast. Came back with 30+ lesions, many of which had MS characteristics. Doc said I likely had MS, but needed more tests to confirm. Unfortunately at this time, I had to change docs bc my insurance changed. Saw someone new, he sent me for a spine MRI (w/ and w/o contrast) and a LP. Both turned up clear. Lots of blood work too - all clear. He put me on Avonex at that time. Let me note that this doctor and his office were very, very unprofessional. There were lots of reasons for me to move my case to the area's MS specialist, other than simply wanting expert care of course.
July 2008: Finally got in to see Dr. Edward Fox (MS specialist). He looked at all my records and did an full history and neuro exam. He also sent me in for a visual EVP, which came back clear. At this point, he thought that it would be best for me to get off the DMDs to see if we could see any progression and get a definitive diagnosis. I took my last shot in July.
August 2008 -New brain and spine MRI - no progression. Dr. Fox was monitoring me to see if I had any new symptoms or lesions on my next MRI, scheduled in March 2009.
January - February 2009 - SX: odd lightheaded, dizzy feelings in split second doses.
March 2009 - GREAT MRI! No new lesions, shrinkage of old ones.

Last time I saw Dr. Fox, he told me that my lesion placement and size/shape were consistent with MS, but he needed to see progression (per the McDonald criteria) to officially diagnose me. But now, my MRI has actually improved - crazy!

So, here are the questions that I'm going to ask:
1. Could this possibly not be MS? If so, should I be exploring different diagnoses with other doctors (vascular disorders, lyme disease)?
2. If no new lesions, why have I been dizzy for 2 months?
3. What can I do to shrink even more lesions?! :)
4. I've been following the Swank diet and taking supplements (lecithin, evening primrose oil for the lineolaic acid, omega 3 and multi-vitamin) - does he endorse this?

Okay, any further than this and my mind is blank - probably because I'm still reeling from the good news. :D

Any input that y'all have would be very helpful at this point.

Thank you all so much!

-Carisa-
:grouphug:

hi carisa,

i think you've thought of some good Q's. i can't think of anymore right now.
i'm glad your mri was a good one. it's frustrating that you can't get a firm dx but good that your labs/lp was negative.

when i was first dx'd it was by mri alone. but later i did have O bands.

you might consider keeping a sx journal. that might help with a timeline of your hx IF anything else develops.

Carisa, great news on your results! Let us know how your talk with the doctor went.

Well, I talked to the doc (by proxy... his receptionist :rolleyes: ).
All he would say was that I have no "active disease." How non-committal is that? Haha! But he's sending me to a regular neuro to look at my records and see what alternatives she may want to test for. That apointment is on the 31st. Other than that, I'm still livin' in limbo-land. But at least I know that things haven't gotten any worse in this last year. :D

Thanks for all of your support.

Hugs!:grouphug:

It's the diet!

Seriously, I think we'd have a lot more healthier people if they were eating low fat and watching what they put in their bodies in general, but maybe that's just me ;)

Glad to hear your results are so excellent. No active disease are very nice words to hear!