Do references to MS is a "dx of exclusion" make you uneasy? Uncertain that there could be that one stone left unturned? Does it make you feel like your taking your MS meds because "you don't have anything else?"
It's simply not so - I've found oftentimes this phrase is used broadly, and it really does muddy the waters, especially when presented to those who are not yet versed in what MS is vs what MS is not.
So, fret no longer. This is an excellent write up that puts so much of what we discuss here in perspective. It defines what a dx of exclusion is, and what MS is not. It includes important facts that all who are affected by MS should know. Please read it when you've the chance....It's in two parts:
Wow Shell, that is a really informative article, as is the article it links to re: mimics of MS. And very generous for Dr. Howard to offer his email address and his willingness to answer individual questions!
As I read this article, it brought to my mind the time when my neuro suspected I might actually have Devic's disease (NMO) and not RRMS, which I'd been diagnosed with and been treated for, for over a year.
He considered I might have Devic's after an ON attack. Of course ON is also a classic presentation in MS, but because of other factors (little brain involvement on MRI; one brain stem lesion but several spinal cord lesions; aggressive disease course, 3 attacks in a year or so) consistent with Devic's, he ordered the NMO IgG test.
It came back neg, which wasn't all that reassuring to me, having learned that there is a high rate of false negs for Devic's. However my neuro seemed satisfied he had ruled it out, and continued to treat me for RRMS.
That was over 3 years ago and I've only had one attack in that timeframe so it seems the Copaxone is working, and I've developed no new symptoms suggestive of Devic's.
The experience actually turned out to be positive for me, and helped put my disease in perspective for me. I thought nothing worse could happen to me, except something life threatening like cancer, until I was faced with the possibility of a Devic's diagnosis. I saw my neuro-ophtha around that time, and he was very candid with me that Devic's was a much bleaker diagnosis with a worse prognosis.
So as time passed and it was apparent that I hadn't been misdiagnosed, I was actually RELIEVED to have MS. It was a rollercoaster of emotions for me but I think in the long run this was good for me, to better appreciate that I could be much worse off than I am.
Sorry for the tangent, I hadn't thought of this in ages but the whole dx of exclusion thing got me thinking about it again.
Great link, Shelly! I hope this puts to rest any "diagnosis of exclusion" dogma.
For myself, I don't have any Gd enhancing lesions, and I have a neg. LP. Just some old lesions, a wildly abnormal neuro exam, and a 20+ year history. A good neuro will listen carefully, and look at timelines carefully (provided the timeline is to-the-point). I also have an "old school" neuro who has been doing this for over 50 years. Yeah, he's old as dirt, but he's GOOD.
DB! I remember when the possibility of NMO was ontop of you. I also remember how expert you became in this mimic - remember counting on your knowledge for others. So glad you enjoy that write-up as much I. Such an educational piece for those who want to know facts.
G-Guuurl - Yea, you sure have a vet, who knows exactly what he's looking at when he sees it. You said it - a good neuro is careful and good.
Would like to keep this bumped for more to see.
For those who didn't attend or don't remember - Dr. Howard was the MS neurologist who did the chat with us a while back.
His explanation on this idea that MS is a DX of exclusion (which I must confess I sometimes say and will try to break that habit!) is excellent. If only all of you could be treated by a doctor with this mindset.
I hope everyone will take the time to read his articles.
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