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.

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