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

Lesions – #AtoZChallenge

le·sion  /ˈlēZHən/ noun   
1. a region in an organ or tissue that has suffered damage through injury or disease
Stop me if you think that you’ve heard this one before. – Marr/Morrissey

Multiple Sclerosis gets its name from the lesions it causes on the tissue of the central nervous system. Sclerosis means “scarring,” and when the immune system destroys the myelin coating on the nerves, it leaves telltale scars. Multiple scars, if you will.

Now, the majority of people with MS have lesions in the brain. Some also have lesions on the spinal cord. Fewer have spinal cord lesions only. Guess which group I fall into! Yep, my brain is clear; I have lesions on my spinal cord.

Now, the spinal cord is divided into sections (from neck to tailbone, that’s 8 cervical, 12 thoracic, 5 lumbar, 5 sacral, and 1 coccygeal, for those of you keeping score at home), each of which is identified by its section and its number. My spinal cord is damaged at T10 and T11; for reference, T10 is right at the navel.

Why is this important? Well, the area where you have damage/scars/lesions dictates the location of your symptoms, so I could have problems from the waist down, but not from the waist up. I also have symptoms on one side of my body only (the left side! Another L!), which means the damage to the spinal cord is only on one side. Still, it affected both sensory nerves (those that carry information back to the brain) and motor nerves (that bring messages from the brain telling your body to move).

Thus, I have the following: nerves that send too much information about soft touch (making innocuous things like clothing or stepping on the floor feel really really uncomfortable) and not enough about sharp pain (so being pricked with a pin feels like it’s happening through a wetsuit); various areas that are numb; and muscles that don’t work properly and end up making my leg weak or my foot droopy or my bladder unresponsive.

Yet again, I’m afraid this sounds whiny, which isn’t my intention! It’s just meant to be informative, to let people know what MS is like. Believe me, I know how lucky I am.

Kumfs – #AtoZChallenge

(David said my “K” word should be either kleptomania, Kansas, or keratin. These have nothing whatsoever to do with MS. Or with me, for that matter.)

I have been known to fall a lot in my life. I think I had stitches in my head three times before my fifth birthday. I was teased mercilessly by my friends in junior high for falling off my brown leather platform sandals while standing still. (I just keeled over. There’s no explanation.)

Mine were like “G,” although — had I seen them — I probably would have wanted “K” back in the day.

If I’m completely honest, my friends have teased me my entire adult life about my inability to wear heels of any height. (It’s like Joey said about Chandler and bras. I can’t work ’em.)

Now, throw Multiple Sclerosis into the situation!

When I was first diagnosed, I was falling pretty regularly. I had foot drop in my left foot, so I’d catch my toe on the floor all the time. But, just like in 7th grade, there were also plenty of times that I just fell over for no apparent reason.

It got to the point where I was constantly checking in with David on it. “Would anyone have fallen right there? That was kind of uneven, right? I mean… right?” Sometimes he was able to reassure me, sometimes not.

I fall a lot less now. I wear what I call “orthopedic shoes” (almost exclusively walking shoes from Ziera, which used to be called Kumfs), because they are comfortable, supportive, and don’t irritate my sensitive foot. I can get most of the styles in whatever color I want, which is black. (They sell other colors for you people who don’t want to own ten pairs of black shoes.)

I sound like an ad, I know, but it took me a lot of trial and error to find shoes that would work, so if this helps someone who has similar issues, I’m glad. These shoes are spendy, I won’t lie; they probably average about $150 a pair, but it’s an investment in my health. I’ve decided to consider it a fair exchange for all the money I have saved by not dyeing my hair.