I had another MRI yesterday at the request of Dr. She Who Will Not Be Named...just checking under the "hood" (or possibly "roof", given my recent shingles fiasco) to make sure nothing new and exciting has popped up in my noggin to account for my recent status change and fainting spell Wednesday. Or, perhaps she was just checking to make certain there IS a brain housed in my thick skull? She didn't really say WHAT she was looking for when the test was ordered. MRI's are as routine as a morning crap for me these days, so I didn't object to having the test done, and went like an MS lemming to the local Club Med for my appointment time.I always request a copy of my scans for my own viewing pleasure...I've become fairly skilled at reading the pictures of my OWN brain (probably not YOUR brain, but I know what mine is supposed to look like) and came home yesterday to pop the disk in my computer. I scrolled through the various "cuts" and brought out my last MRI from April of this year for comparison...just like a *trained* radiologist (LOL).
After careful arm chair neurologist/radiologist scrutiny, I declared, "Nothing new", and sent an email to Dr. SWWNBN with my educated findings. She later emailed me back to report my *findings* were correct...unchanged...nothing new...same old brain with Multiple Sclerosis.
Now, I know what I'm about to type is going to sound strange to some of you...and a few, it may even piss you off! And still a few more of you will mumble behind your computer screens, perhaps even firing off an email or two to MS friends, telling them to go "read the blog of the nutcase over at BrainCheese"...whatever. Think what you will. And still a few more of you will leave comments telling me to "count my blessings" and what not in an effort to "cheer" me. That's OK, too.
But...has ANYONE ELSE ever experienced the let down of having a "normal" or unchanged MRI scan when in the throws of feeling like MS crap?!? I mean seriously...it's not like I was WISHING for a big ol' brain tumor to suddenly appear on my MRI...or PML, or Herpes Zoster in my brain (which is what Dr. SWWNBN may have ALSO been looking to rule out). Quite the contrary, actually. I was HOPING nothing had changed inside my skull...WISHING even the MS lesions might have disappeared and I could proclaim a misdiagnosis.
Somehow however, deep in my twisted thinking, I was rather counting on the MRI to shed some light...give some explanation to...my recent relapse symptoms/shingle debacle/increased fatigue situation. Certainly not a brain cancer, but "something" visual to say, "Here it is. This is the problem. It's not ALL just in your head. There really IS a reason you feel like crap"...some little blip on the MRI screen I could point my finger at and proclaim, "There! I told you I was sick!"
"Unchanged" is supposed to be a good thing...no new lesions...just the same OLD ones interfering with my neurological functioning. Status quo. No surprises. Nothing remarkable on exam. Just my brain on MS.
And still, I struggle with the feeling I need to JUSTIFY my recent condition with a pictorial portfolio of NEW enhancing lesions and black holes in my brain to show the rest of the world a visual demonstration of why I feel so badly. I need to have some OUTWARD symbol or "sign" that tells the world I have PERMISSION to complain...to feel like crap...to worry...to feel vulnerable...to explain the grief of this illness...to need to rest...to feel frightened or unsettled...
OK...go ahead and fire off your emails and comments now...I'm suffering from the LET DOWN OF AN UNCHANGED MRI. Go ahead and remind me of my "blessings" and starving children in China and somebody you knew who had MS and was in a wheel chair by age 21...I'm sure that will lighten my mood. LOL
Or, on the RARE chance you, too, have ever experienced this phenomenon and will ADMIT IT, leave me a comment about that as well...
11 comments:
Because MRI's are the most valued diagnostic MS tool today, I think I look at it as validation.
I too went through a time this past year when new MRI's showed "no active lesions and unchanged since previous" and I got mad because I was trying to qualify for Social Security and for the life of me, didn't know what I was going to do if I was turned down.
Long story short, I was not turned down but no new findings made me feel like maybe the MRI was malfunctioning that day, they mixed up my films with someone else's, or gee, maybe I'm getting better!!!
I think if there were a more definitive diagnositic tool for MS, these feelings of being letdown would go away (smile).
Everytime I go for an MRI of some body part, I pray (while in the tunnel!) that it will give the docs the answer to my symptoms.
And I don't see anything wrong with that!
Glad you're doing better (shingles) and that someone else has the guts to say they feel the same way I do, while in the tunnel, and after.
Anne
I think you want to find something so there is something to blame for the crappiness that has been knocking on your door lately. When I get MRI's now I'm just waiting for them to say all thelesions are now gone, TADA. I understand what you are getting at. But hey look what has been going on with my brain lately.
Sharon
Oh, yes ma'am. As ungrateful as it sounds, I felt that way in June when I had my last MRI. And for exactly the reasons you describe: I wanted to have something to "prove" to my neurologist that I felt truly crappy and it was my MS. (Turns out, for me, it was the MS MEDICATIONS, but still...)
So yeah, definitely no where you're coming from. Actually, when they found the lesion in my brain last June that confirmed my diagnosis I was relieved. Figure that one out. :)
Out of curiosity, has she ordered any spinal MRIs lately? When I was diagnosed they did my lumbar and cervical spines and that was where most of my lesions were...
When I used to see mt MS DR. of 14 years, no matter what my latest problem was, ge wrote on my report "in complete remission." Used to make me crazy! MS attacks not just the brain, but the ENTIRE CNS. Every minute spec on every nerve can be compromised.And for the icing---not every crappy thing is MS. You'll figure it out. Wouldn't it be nice to have a home MRI?
Well not being able to comment on regular MRIs, but I understand what you are saying since when I go to the doctor with ear pain & he looks in it only to say it's just full of wax, I'm a bit disappointed as I want the pain to be more than just wax to justify my whinning in his office - I mean heck no I don't WANT an ear infection . . . is that sorta what you're talking about?
DITTO!
I am not shy about this -- I root for horrible things to show up in an MRI or blood work to justify how I feel. People always say, "Oh that's good that there was nothing wrong with your bloodwork," but I say, "Dang it, now what??" Why can't MS fatigue show up on or in some test like fatigue caused by infection or anemia? Why can't we see MS progression in an MRI or a spinal tap? It is so frustrating!
I have had MS for 20 years,have lived in Vermont and Maine and have had 5 neurologists in that time and not one of them ever ordered an MRI. I was never thinking of the status of my lesions so I can't respond to Linda's anxiety as it is foreign to me. I finally demanded I get an MRI this year so I finally got to see my brain; my neurologist said there are as many lesions as can be expected for someone who has had MS for 20 years and the problem is in my spinal cord now. Yes, I feel crappy too. And I did all those years I wasn't thinking about my brain. I have no words of wisdom about this issue--I would have been a nervous wreck if I had been aware of my lesions all these years so don't apologize Linda and be glad you are getting better neurological care than I did.
You didn't get an MRI of the spinal cord did you? Lesions show up there as well. And I've read that "damage under the hood" is often microscopic.
I can't have MRI's so no sympathy from moi!
But we believe you. We've all been there. And we understand.
I totally understand the feeling...wanting visual justification, something solid to see and say.."That's it! That's the culprit that's doing this to me!"
I learned something about MRI's this past summer. I was in a clinical study for Teva while taking Copaxone for 2 years. My neuro at the time was the clinician for the study and I had more diagnostics at no charge while taiking the same meds anyway. It was a good deal. When I showed more and more progression and was told I needed a different approach, I left the study to begin Rebiff. The exit for the study required all testing and MRi's for completion. Meanwhile I began with a new neuro and he did his MRI of me 30 days before. New neuro was not alarmed by MRI he took..typical MS brain...but when the study forwarded their last MRI to him (from 30 days later) he called me immediately and was very alarmed. The study MRI revealed 13 more lesions than his did...taken at same place with same techs and radilologist. Same brain, same techs, different PROTOCOL!
I haven't looked into the differences in scan protocals, but obviously there is one. More sclices? I dunno. On a more creative note:
Maybe our lesions are like stars in the galaxies...it takes light years for us to see them...
I've only had the one MRI but can tell you honestly that I was kind of upset (once I got over the dope slap of the dx) that I "only" had 3 visible lesions. This after what the dr assures me is 30 +/- years of having the foolish illness.
I've never had a spinal MRI so don't know what that looks like. My dr. feels it's probably a mess but I'll probably never know. Once I got the dx it seemed a waste of an afternoon to have another one done. The dx won't change. :)
Anyone, even without MS can get Shingles. Probably combining that with the MS made things all the worse.
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