Friday, March 14, 2008

Christmas In March...

Hmm...I'd have to say February and March of this year have REALLY been full of "surprises"...kind of like opening a neatly wrapped package containing a bag of poo!

I just returned to the hut a few hours ago after gracing my presence at Club Med for an ECHO of my heart (post Novantrone thang), yet ANOTHER MRI of my noggin (pre-Tysabri thang), and having a blood draw for CD4/CD8/CMP and HIV...yep...HIV, too. The Tysabri folks are now asking for THIS test as well (which makes sense since HIV can cause PML...the thing Tysabri initially got a bad rap for allegedly causing...I think that theory has been disproven at this point, however, as NOT being Tysabri alone that caused the PML).

I DO like my Club least the imaging and radiology peeps. They are always very courteous AND on time...kind of an anomaly in Health Care these days. And I KNOW them and they KNOW me...we have a working relationship. Very nice...

I always snag a copy of my MRI on disk before I leave the building with Elvis...after all...I DO play a doctor on the Internet, so I like to take a peek under my own hood BEFORE Dr. She Who Will Not Be Named has a chance to do surprises that way. And, I'm getting pretty good at reading MRI's of the brain and spine. Today's photo shoot will be somewhere around my 20th one I've had...gotta learn something after THAT many rolls in the tube! (No, my doctor is NOT abusing the system...I was in a Rituxan study in 2005-2006...had one every month, whether I needed it or not!)

So, I took a gander at my MRI slides and...well...mind you, I am NOT a trained radiologist, "appears" I am once again lighting up like a Christmas tree inside my head. Not good for those of us in the "know" about MS and MRI' one likes to hear the words "enhancing lesions", especially those two words used in the same sentence!

I fired off an email to Dr. SWWNBN requesting, when she had a moment, to stare at my slides herself and email me a ruling...I imagine I'll hear back from her sometime next week since today is Friday. Operative words in the email were, "when you have a moment"...she's a notoriously busy a bee in the summer...seems to fly from one flower to the next in rapid succession.

But I think my observations are correct (I don't need no stinkin' neurologist!) and, unfortunately, make perfect sense...given the level of current disability/relapse symptoms I am experiencing. Guess I kind of hoped my MRI would be a shout out, "All clear!"...guess I was fantasizing maybe even my MS would be gone. Wouldn't THAT be a kick in the shorts?!? I suppose I should just be thankful they even FOUND my brain at all (oh, AND they found my heart on the ECHO, too...see Sherry...I am NOT a heartless beauch!).

For those of you still wondering about my manic moment regarding putting together some sort of quilt/tapestry representing those of us with MS, I STILL have that on my agenda...just simmering on a back burner for the time being. And for those of you wondering about my review of Joel Goldman's book, "Shakedown"? Well, I'm a SLOOOOW reader! It's coming...geez...seriously, cut me some slack here. From the looks of things, I've been busily playing a little game in my head called, "Pop Goes The Lesion"...I haven't had time for fun things like reading. :-)


Anonymous said...

Do keep us posted on the response from Dr. SWWNBN. I do hope you have misinterperted the MRI and that they are actually evidence of shringage of leisions rather than enhancement! Fanasize onward until further notice.

Diane J Standiford said...

Wasn't the Novantrone supposed to stop this? OW! OW! Hey! I'm just askin' My advice is OW, wait, that you focus on you weight, girlfriend, you are way too thin!

Bubbie said...

What's up here? are we twin sisters of different mothers? I had an MRI at 7am friday morning and was told to go straight to the hospital to start a 3 day drip... my answer of course was no way in hell! I'm off to the island! went for the pictures but no drip. just a wonderful weekend. should be hearing from doc today.
It's always something....*sigh