Paranoia – #AtoZChallenge


Since I was diagnosed with MS, I’ve noticed that I’m always waiting for the other shoe to drop.

I question myself constantly:

  • Would anyone have tripped and fallen there? (That oldie-but-goodie!)
  • Could [insert every possible health condition here] be a new MS symptom?
  • Am I having a flare-up of an old symptom?
  • Is this symptom a sign that I am going to get sick in the next day or two?
  • Do I have an infection I don’t even know about yet?

Those paranoid questions lead to other questions, which fill my brain all the time.  Here are some of today’s:

  • Am I always going to be this tired?
  • Should I take the fatigue medication (usually a stimulant) and trade the fatigue for some really unwanted side effects?
  • Will I ever be able to work consistently without having to take so many days off?
  • Will I ever stop feeling guilty about calling in sick? It’s not like I’m doing anything but lying in bed, but will I always feel that I’m not living up to work expectations?
  • Will this disease progress?  If so, how quickly?
  • Are my cognitive skills declining due to brain lesions, or am I just getting old?
  • Is going out on Social Security Disability in my future? How do you even get it?
  • Am I going to need a walker?
  • Should I move to a one-story house?
  • Will Quinland get MS? (There is a possible genetic component.)

And so it goes. The real question is, why am I sitting here worrying about all this when there is so much good in my life? Am I a bad or ungrateful person? Couldn’t I put my brainpower to better use?

Yes, I could definitely find better things to think about. But the darn questions about MS are so insidious because the causes and effects of the disease, the symptoms and the treatments, are all so uncertain.

It really makes you wonder.

paranoia” by Emily ClineCC BY

Orange – #AtoZChallenge

Everyone knows that pink ribbons represent breast cancer awareness. But did you know the color of MS awareness? Yes, it’s orange! (A color, I should add, that it shares with leukemia and kidney cancer, as well.)

At Walk MS, there is a sea of orange-clad people walking the bridges of downtown Portland. Lately, the orange has been spiced up with the addition of a bright lime green, which I love.

Hopefully, someday soon, those orange ribbons will be as ubiquitous as the pink ones, and MS research will really take off. And hopefully, in the very near future, cures will be found, and neither of these ribbons will be needed.

MRI – #AtoZChallenge

We apologize for the interruption of this #AtoZChallenge series. (I had vertigo for three weeks and got behind on everything; then I got all depressed because I couldn’t dig out of the backlog. I’m still not out, by any means, but I miss you all.)

We now return to our regularly-scheduled programming.

I wish it were not so expensive to get an MRI — I’d have them annually. Or more often, if they’d let me!  Because it gives a clear picture of the brain and spinal cord, an MRI can give the clearest picture of the progression of the disease, which would keep me from worrying about it so dang much.

When a person with MS has an MRI, the scarring from the damaged myelin (the coating over the nerve fibers) is visible. If the test is done with gadolinium dye injected into the veins, then areas of myelin that are actively being destroyed will actually light up on the scan.

Some people are afraid of MRIs, fearing that they might get claustrophobic in the machine, but I seriously don’t mind them. In case you’ve never had one, let me describe the process, from my experience.

After you dress in the standard very-attractive backless gown and paper slippers, the technicians make sure you have NO metal on you. No earrings, no watches, no pacemaker, nothing. Since the biggest and most important part of an MRI machine is a giant magnet, I suppose it could suck the metal right out of you, but don’t quote me on that.

When you get to the machine, they hook you up to an IV of gadolinum dye and give you some earplugs, if you are lucky. You lie on the table and get slid into the machine just like a pizza into a wood-fired oven or a drawer into a file cabinet. The tube is strangely close to your face; once, I had one with a mirror right there, but I didn’t think it really helped with the strangeness.

The technician speaks to you through a speaker, telling you what you will hear and/or what you need to do. Usually, you don’t need to do anything, but once I had a cervical (neck) MRI and they told me not to cough or swallow. Trust me, there is nothing more apt to make a person swallow than being told not to. I swear, your mouth starts watering like nobody’s business and you are convinced you will drown before the MRI is over.

What is the same with every MRI I have had, though, has been the sound. I do not have any knowledge of the workings of magnetic resonance imagery, but I can tell you one thing: it is loud. It sounds as though all the employees of the hospital have been gathered together outside of your little tube and instructed to pound on it with their own pipe wrenches. Given that your average brain MRI takes 30 to 60 minutes, you begin to think they will bust through the tube before it is all over.

I have a secret MRI-distracting weapon in my arsenal, though. Years back, I decided to try to say an entire rosary during the MRI. Between the soothing rhythm of the prayers and the mental arguing over what is a Joyful or a Glorious Mystery and what is one of those new-fangled Luminous Mysteries, the entire procedure is over before I have finished. Or else I fall asleep. (Hey, it happens.)

When it’s all over, they roll you back out. Do NOT, under any circumstances, expect that the people who did the test will tell you a single dang thing about what they just saw. They can’t, by law or something, even if they wanted to, even if they have the expertise to read the results. I’m hoping they will, still. But no, they just send you back to your little curtained cubicle to put your clothes back on. You have to wait until they give the film to a radiologist, who reads it and then gives the information to your neurologist, who then reads it and gives the information to you.

I just looked up “MRI” on flickr’s Creative Commons, looking for an image of an MRI machine that I could use for this post. I first got to scroll through page after page of MRI scans, which suits someone of my level of morbid curiosity quite nicely. It was cool to see the variety of head scans. Some show the wrinkles of the brain, some show the eyes, some clearly show the different brain sections.

My scans never look like that. They look way more like big gray slices of nothing, which in MS terms is apparently considered an excellent result. I suppose what is shown all depends on the level at which they are taking the images, whether from the brain equivalent of one inch or 10,000 feet. I’m going to have to ask about that. Anyone know a radiologist?

Big MRI” by liz westCC BY