Forum

consultant letter really confused now

i have today received a letter from my consultant and he says that my current scan does not show any current active MS but then hes saying there is some minor white matter changes which are reletively peripheral in the brain and in their own right are not diagnostic of MS

he then goes on to say my previous scan showed lesions are not evident on the current scan suggesting they may have resolved

he is now saying i have to have a MRI scan of my spinal cord,so now more waiting again he had me stop my betaferon 7 weeks ago in preperation for Tysabri so now he is saying i dont meet the criteria even though i have had 2 relapses in the last year both treated with IV Steroids

I dont under stand all this it makes no senc to me i was diagnozed 8 years ago and it was diagnozed with MRI scan and also a lumber punch

The letter is (I think) saying:

"my current scan does not show any current active MS" - you have no enhancing lesions, i.e. lesions that showed up on the scans that they did when you had the contrast injection. Enhancing lesions are ones that are active at the time of the scan.

"some minor white matter changes which are reletively peripheral in the brain and in their own right are not diagnostic of MS" - the only new lesions are not in MS-typical areas. This isn't uncommon tbh - lots of us have lots of lesions in pretty random places.

"my previous scan showed lesions are not evident on the current scan suggesting they may have resolved" - some of your lesions aren't visible any more because they have been repaired enough to not show up. Resolved is the official word for this, but it's a silly word because it suggests that everything is OK now, but repairs are never perfect.

- a spinal scan may show active or new lesions in which case you can still argue for Tysabri so it's a good thimg that you're having one.

 

He's not questioning your diagnosis in this, so don't worry about that.

I hope the spinal scan goes well!

Karen x

My last consultant visit was after I had received exactly the same kind of letter. It stated that there was no current activity in my brain! (not the best phrasing ever but caused a few laughs if nothing else!) Some lesions also were not evident anymore. I had just suffered 2 relapses back to back and would have thought the MS was getting worse, not better. However, consultant explained letter to me, pretty much in the way that Karen’s just explained it and it was all a positive message . even though results mean I won’t get referred to tsarbri, the ms is not deteriorating and there is recovery after relapses. Spinal scan is a good idea though as lesions could be more visible on spine. Hope this helps!

Hi Karen, in your reply to the poster, I see you talk about lesions being repaired. I didnt know this can happen. I thought demylination didnt replair itself. Or have I understood you wrongly?

luv Pollx