Year 01 A.M.S. – Update/Gut Check:
As far as I can gather, it has been one year since I started feeling (read sensing) the effects of Multiple Sclerosis. At the end of winter, February to March of 2012, I started noticing changes which came as red-flag moments.
One day in early spring I walked outside and I couldn’t see anything in the center of my field of vision from my right eye. I could “see”, but it was as if I’d looked at the sun too long with only one eye, or had a camera flash on only my right side. My depth perception was all wonky, also. Looking at the clothesline or the line of Ginger’s leash would make my head swim and beg my eyes to focus. For a few days, it happened every time I went outside, and I mentioned it to my family a couple of times, because it was weird. After a few weeks, it just cleared up. I forgot about it, mostly, unless it flared up after strenuous exercise or getting overheated.
“…man, I wonder why the bottom of my foot is numb”
“…huh, I wonder why I can’t walk a straight line across the back yard.”
“…damn, it’s crazy I can’t put my flip-flops on without almost falling over!” and…
“…Oh MY G…move! I have to pee, RIGHT NOW!
And once in the place to go ….now, why can’t I GO???”
Mental changes came last spring, also, but I didn’t recognize those as readily. Honestly, when I think back, the mind slides of multiple sclerosis may have come before my eyesight alerted me to the fact that something was wrong. For months, I’d noticed I would forget words that I was just getting ready to use as I started speaking. Replacing it with the first word that fit, and saying “but no, that’s not the word I’m thinking of, really, but you know…” always with the feeling that the word I wanted was just on the tip of my tongue.
I can taste them, those disappearing words that flit and land in my mind as I form a thought to speak. Then, when I start speaking, it lights away, like a butterfly or a bird you can still see but can no longer positively identify.
That was first, and easily the most aggravating, loss to MS, but it wasn’t the last. Other than some mild foot numbness and ultra-clumsiness, I started getting these lightning, itchy-tickling flitters across the right side of my belly at my waistline. After a few weeks of feeling these, the skin of my belly numbed. I’m a stomach-splayed sleeper, and it felt like I was lying on bunched up blankets, even though I was only on smooth sheets.
I’ve been teaching human anatomy and physiology for 6 years. I knew it was a nervous system issue, so I thought I may be developing shingles since I’d had chicken pox in my teens. I waited for a rash which never came.
By summer, I had no sense of skin sensation all the way around my mid torso and developed a tight-band feeling, like I was wearing a too-tight bra. It would come and go, whether I was wearing a bra or not. I couldn’t feel the exact placement of someone else’s hands on my torso if I didn’t see the touch.
My right hand began to go numb. Washing my hands, both hot and cold water felt different to my right hand compared to my left hand. It tingled and my fine-touch sense suffered.
I began to think I had a vertebral disk problem, maybe brought on by being a tall girl in a world made a bit too short. It seemed to be centered in the thoracic column, which wasn’t as common of an area of disk-slippage. But it didn’t explain my hand numbness, because that would be a cervical problem. I did some research and had a list of possible conditions, one of which was MS, but I didn’t even consider it was anything THAT severe, so I dismissed it instantly.
I was about to take a beach vacation with family, and just happened to have a retired orthopedic surgeon, and a physical therapist as companions, and waited for the beach week to see if they could “see” anything. At this point, I hadn’t drawn a connection between the vision problems and intermittent foot numbness to the more alarming corset-grip I was in.
Nor had I drawn a connection to a particularly strange and repetitive sensation I’d been having for months. When I drive, I keep my phone in my lap, so I don’t have to look for it if it rings while I’m driving. When I safely can, I glance down at it. A lighting flash of sensation, not quite pain, but alarming nonetheless, would shoot down my spine from the nape of my neck to the sacral plexus, and across my shoulders and through my hips. It is sharp and disappears just as quick. I now know it is L’hermittes Sign, common in people with cervical lesions of MS. I thought I’d pushed it too far in yoga, or stretched out my cord as an old headbanger in the 80s, and was now paying the price.
Nor the feeling of my thighs needing to stretch when I got up from sitting, you know when you’ve been down too long and you get up and stretch, and you get in it deep and your muscles lock up, like a good full body yawn? It’s like that but somewhat violently and even when I don’t want to stretch. It’s called spasticity, and it too is common with MS.
The beach vacation was very nice, but I was miserable, and everyone noticed I was definitely not myself. Beach heat and MS equals wretched fatigue. I would crash out at 8pm before adult game time/midnight swim hot tub partaking, and I shorted out on hours-long beach combing with the kids. We had a sand volleyball court in the back yard of the beach house, so my son and I began playing, and I fell hard several times stumbling while running and looking up. I blamed it on the sand and age, but everyone knew I was more able than that. It was a shocking display. This was not normal, this was not me. My resident vacation doctors were just as baffled, but they didn’t have all the information, because I hadn’t added the other ‘little’ things into the conversation.
I had already made an appointment to see my doctor the Monday after vacation. In the interim I finally clicked on the MS link on my list of possible causes. It was a veritable checklist for everything I’d been feeling, and it all clicked in at once. Oh, shit.
I started researching MS exclusively, because I knew. When I saw my Doctor, I didn’t say MS, I just described this odd list of symptoms, we agreed I needed a neurologist, and I did the same with him. I described and let him draw his own conclusions; we agreed I needed MRIs and blood screenings. Of course everything was positive. By September, it went on my history. Official: Multiple Sclerosis.
Now that I have researched my way around to my satisfaction, I think the lesions began forming in my brain first before forming down my spine. Lesions have been found on my brain, my cervical spinal cord and my thoracic spinal cord… every where we scanned.
They seem to have developed with devastating swiftness as I have, in one year, gone from a fit and active, multitasking woman to one who struggles through muscle spasms slowing every step to the kitchen for a cup of morning coffee, and needs a nap by the time the school bus leaves. I’ve gone from climbing mountains to using a cane to get around campus so I don’t fall down.
I can’t get all the way through a grocery store for a full shopping trip anymore.
On November 3, 2012, I began disease modifying treatment (DMT). I rejected the medication my neurologist preferred for the one I researched as best for me. By that time, I was having much difficulty walking, using stairs, and I was going down fast. I have no problem injecting my medication every day, because I know what the alternative is. It’s a wheelchair. I started DMT just in time.
I plan on writing about the particulars of treatment later.
I’ve been in treatment for four months, and I think I have finally leveled out and learned my limitations. The DMT does nothing to help the symptoms, it is to slow (hopefully stop) the advancement of my condition. My symptoms have never abated, and have yet to go into remission, but I am learning to carry on.
Muscle relaxing medications help take the edge off function disability, and painkillers helped with learning to deal with the pain. You will notice ‘painkillers helped” is past tense. That, too I plan on writing about the particulars of later.
It’s a full-on, crazy ass trip. But it is not the whole journey.
I plan on writing about the particulars of the journey later.