It's not all in my head. The MS that is. We had suspected it wasn't but now there is visual proof in the form of a nice thing called an MRI. It's not all in my head. Whew. I know that sounds funny. But I was diagnosed with five little spots in my brain. All of them were smaller than the tip of my little finger. I wear large gloves...from the children's department. Over the course of nine years those five white spots have not changed. They stayed the same size, in the same place and made me feel like I was blowing this MS thing way out if proportion. It made no sense to me...five tiny white spots.
Before you think I am crazy let me explain something. I am a research junkie. I know what the "typical" MRI scan of the brain looks like. I know the lesions are usually a bit larger. Usually change of disease progression. I know the effectiveness of MS meds are determined by the slowing in brain lesion development. And because I have actually researched this I knew that my brain made no bloody sense *(I research other stuff too...like dark matter theory and how to make moorish coffee...it's not just about the MS)
Getting a piece of paper stating "no changes apparent at the time of this scan" would send me into a minor depression. How could there not be any changes? The loss of sensation in my legs had moved to above my knees? I walk with a cane 75% of the time because my leg muscles spasm and my balance is getting worse. I used to be able to run and now I can ask my feet to move and the response I get back is ---silence----silence---quoi? My legs don't talk to me. And it is getting worse. Rather rapidly in my estimation. I would say this confusion is the result of me doing too much research but...it had my doctors confused too. So they sent me to a neurologist at Vanderbilt (because every girl should have 3 neurologists in her life). The good thing is I like my doctors and they are always good at giving me the facts hard and straight like a good shot of Jagermeister. And for the past two and a half years that shot has tasted like "we can't really explain this but it could be in your thoracic spine." Subsequent MRIs showed nothing, nada, and zilch though the doc at Vanderbilt did say they were a bit crap (the MRI films that is).
So about two weeks ago I went down to Vandy (always a day trip...2 hours there...2 hours back...boring for my driver). And sure enough...the MRI showed nothing. Except a shadow of a lesion. Not bright white...more like a lighter gray. Not easily discernible until you paired it with the minor spinal cord atrophy (now those are scary words). And not in my thoracic spine but rather in my cervical spine. And about and inch to an inch and a half long (so it is equal to 1/65th of my total body length). According to the good doc this all makes sense given my increased symptoms of spinal cord dysfunction. And it is in a place he didn't expect. Damn.
I am glad we found out. I know that sounds strange but I am really glad that we know where the problems are. It was like staring at a really hard calculus problem for hours...just when you give up and put the book away part of the solution hits you with such force you want to bang your head against the wall for not seeing it sooner. I like having explanations for that I know to be explainable. I like knowing I have a reason for the worsening symptoms. It's not all in my head. It makes sense only....
Hey! Who said anything about it possibly being in my cervical spine? I wasn't prepared. I hadn't done my research. I intuitively know what this means. The words paraplegic vs quadriplegic come to mind. And while I like having an answer I have a lot more questions....and I think I might be grieving a bit. Because while people are very good at saying "It might not get worse" the truth is, based on historical evidence, it will. And maybe if I start now I will learn to accept the limitations as they happen....but really.....this is a cruel joke?
Before you think I am crazy let me explain something. I am a research junkie. I know what the "typical" MRI scan of the brain looks like. I know the lesions are usually a bit larger. Usually change of disease progression. I know the effectiveness of MS meds are determined by the slowing in brain lesion development. And because I have actually researched this I knew that my brain made no bloody sense *(I research other stuff too...like dark matter theory and how to make moorish coffee...it's not just about the MS)
Getting a piece of paper stating "no changes apparent at the time of this scan" would send me into a minor depression. How could there not be any changes? The loss of sensation in my legs had moved to above my knees? I walk with a cane 75% of the time because my leg muscles spasm and my balance is getting worse. I used to be able to run and now I can ask my feet to move and the response I get back is ---silence----silence---quoi? My legs don't talk to me. And it is getting worse. Rather rapidly in my estimation. I would say this confusion is the result of me doing too much research but...it had my doctors confused too. So they sent me to a neurologist at Vanderbilt (because every girl should have 3 neurologists in her life). The good thing is I like my doctors and they are always good at giving me the facts hard and straight like a good shot of Jagermeister. And for the past two and a half years that shot has tasted like "we can't really explain this but it could be in your thoracic spine." Subsequent MRIs showed nothing, nada, and zilch though the doc at Vanderbilt did say they were a bit crap (the MRI films that is).
So about two weeks ago I went down to Vandy (always a day trip...2 hours there...2 hours back...boring for my driver). And sure enough...the MRI showed nothing. Except a shadow of a lesion. Not bright white...more like a lighter gray. Not easily discernible until you paired it with the minor spinal cord atrophy (now those are scary words). And not in my thoracic spine but rather in my cervical spine. And about and inch to an inch and a half long (so it is equal to 1/65th of my total body length). According to the good doc this all makes sense given my increased symptoms of spinal cord dysfunction. And it is in a place he didn't expect. Damn.
I am glad we found out. I know that sounds strange but I am really glad that we know where the problems are. It was like staring at a really hard calculus problem for hours...just when you give up and put the book away part of the solution hits you with such force you want to bang your head against the wall for not seeing it sooner. I like having explanations for that I know to be explainable. I like knowing I have a reason for the worsening symptoms. It's not all in my head. It makes sense only....
Hey! Who said anything about it possibly being in my cervical spine? I wasn't prepared. I hadn't done my research. I intuitively know what this means. The words paraplegic vs quadriplegic come to mind. And while I like having an answer I have a lot more questions....and I think I might be grieving a bit. Because while people are very good at saying "It might not get worse" the truth is, based on historical evidence, it will. And maybe if I start now I will learn to accept the limitations as they happen....but really.....this is a cruel joke?
On our long trip home from the clinic I kept reminding myself...."be careful what you wish for." All I wanted was knowledge. I got it. But....it makes more sense this way. And it's not all in my head.
So sorry...silence in the blog world and then a pretty self involved post. Next time-the Disney Trip (yup...I had a great time)
A picture from the trip until next time:
So sorry...silence in the blog world and then a pretty self involved post. Next time-the Disney Trip (yup...I had a great time)
A picture from the trip until next time:
I didn't get to enjoy the Swiss Family Tree House but I had fun embarassing my friend, Sara.
4 comments:
I know the feelings you describe, though I have not had to wait as long as you for the verification (which often in the spine is 6-9 months behind in MRI's from the symptoms). But when I was reading this, I was thinking about my own BUMP and how all you think about is, "What are the findings?", and that feeling nausea that they might say, "We didn't find anything" and then they say they found something and that is GREAT, and it just happens to coincide with everything you have been telling them for many months/years and by goodness they will take notice now, won't they?
Only afterwards, for the hours and then days there is the, oh crap, it is in my head AND my spine. And that's just showing what is already there. And if that showed up what is coming next. And it is not like they are going to DO something to make it go away. So left with: "Maybe this wasn't the greatest present after all" - I empathize. I am not sure what magic thing I can say, since I still spontaously will turn to someone and say, "How is it POSSIBLE for....." But spinal is type 4 of MS is it not, which means clear remissions (when they occur) or do I need to go back to the MS texts?
And no, it's not in all in your head. And I'm sorry about that.
Aah...I wish there were clear remissions but I have not had remissions for about 2 years. I have now officially been diagnosed as having a case of pediatric MS that is now secondary progressive (the didn't even recognize pediatric MS when I was a kid- how unfair is that). Which means my level of disability is the same as a 50 or 60 year old with relapsing remitting MS that turns into secondary progressive (this is how the good doc put it). If I have had MS for almost 20 years then the level of disability is good....if I have only have had it since age 20 then it is bad. Either way it will continue to get worse. No more hope of roller skating for me. But now I know the reason. I just keep trying to balance rational knowledge (and it is fascinating from a medical standpoint) with the emotional cry of anguish...Why me? The lesions in my head do not seem to have affected cognitive ability- something that had me freaked out. They still might...or the MS could just stay in the spine. And you are right...the is that feeling that they wont find it. And what does it mean if they don't? And does it mean it's not really there at all (when we know it is)? I am glad we found it. I don't like the implications but have experienced a kind of sick pleasure of discover and vindication. Hey! I knew something was screwy with those five little spots.
Your empathy means more than you can guess. I get a lot of sympathy (the supportive kind...not gushy tear jerking kind I hate)and I appreciate it but understanding? Thank you
I've gotten to the point where I've stopped counting - I just look for location. Why?
Because knowing there are more in number is depressing. Knowing WHERE they are is even more depressing but essential information.
I have 16 brain lesions in mostly the right side of brain which is supposed to mean my left side is compromised. But docs have no idea why my right side is now not cooperating.
Yes, it is nice and not nice to hear "No new activity" or "we didn't find anything new" or "no changes from last MRI"
Somehow just them finding SOMETHING on MRI justifies our MS, I think. Maybe because MS is still not taken seriously by neuros. After all, it is almost the last thing they consider here in the US.
Take care, Anne
I'm so thrilled to have just found your blog... and thanks, Elizabeth, for the link. Hi witty-and-cynical-yet-charming-MS-chick, and welcome to the show. There's a few of us. Awesome blog!
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