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

Numb – #AtoZChallenge

Did you know that there are different kinds of numbness?

When most people think about being numb, they are thinking of anesthesia — the absence of any feeling. Most people are familiar with the term, relating it to the temporary anesthesia they have when they are having a medical procedure done. When the anesthetic wears off, their sensation returns. This is the kind of profound numbness often experienced by someone who is a paraplegic or quadriplegic, a loss of all sensation past the place that their spinal cord is injured. Some people with MS experience this kind of numbness in certain areas of their bodies. There is no damage to the tissue, but the nerves that transmit sensation to the brain are not doing their job due to being injured.

The other kinds of numbness are not the complete absence of sensation, but rather different states of altered sensation. Paresthesia and dysesthesia are the two most common in MS.

Paresthesia means “irregular sensation,” usually one that is annoying but not exactly painful. Most people have experienced that super-uncomfortable feeling of pins and needles that you feel when your foot is waking up after falling asleep. You really don’t want to walk on that foot until the sensation goes away! This sensation is really common in people with MS. Other manifestations of paresthesia are tingling, buzzing, or crawling sensations. Personally, I have the pins-and-needles feeling in my left foot all the time, but I also have intermittent buzzing. It feels as though a cell phone in “vibrate” mode has been implanted under the skin of my left leg and that I’m receiving calls that for some freaking reason are not going to voice mail. Bzzzzz. Bzzzzz. Bzzzzz. Bzzzzz. Thankfully, that imaginary phone doesn’t ring nonstop, but when it does start buzzing, it drives me crazy.

Dysesthesia means “abnormal sensation,” and can include feelings of burning, wetness, itching, or electric shock, when nothing has happened to cause or evoke those sensations. It can also refer to a sensation that just isn’t appropriate to the stimulus. For example, my left side does not feel sharpness properly from the waist down. I can feel it if you stick me with a pin, but it feels more like dull pressure than a sharp prick. On the other hand, that same area feels innocuous touch — like brushing up against something — inappropriately strongly, such that being lightly touched or even wearing clothing (or having covers on in bed) can be really uncomfortable and impossible to tune out. Needless to say, this can be problematic!

I’m very blessed to have had good results from taking Gabapentin for the paresthesia and dysesthesia I experience. It has turned the discomfort down to a dull roar. Unfortunately, I’ve had to increase the dose over the years. Back in 2009, I took 900 mg/day; now I take 3200 mg/day. I told Dr. Zarelli, my neurologist, that I was worried about having to take so much to get the same effect, but he assured me that it is by no means a particularly high dose, so I guess I have a while to go before I have to find some other treatment. (As long as that treatment doesn’t involve sleeping with no bedcovers or walking around naked, I’ll be fine.)

Pins” by Jayjay P / CC BY

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