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.
