MS officially showed up six years and 14 days after my first ‘MS-like symptom’…which occurred right before my husband and I got married. perfect timing: my left eye became paralyzed. I refer to this inaugural episode as an opportunity to look through the eyes of Picasso. my double vision was horrific: eye patch and then prism lenses for my glasses an inch thick. it was scary. I still remember what it was like to look through my eyes from that time.
oh wait. going back further in time before that happened, there was the time that my right leg collapsed in the office after a meeting…and then more minor symptoms that I certainly don’t have the balls to disclose in a public forum. oh, and after that, let’s not forget the half numb face in 2010. (just a migraine.) and the black floater that popped into my left eye out of the blue following the facial numbness. or the perpetually itchy rib cage and ongoing pain in my left side. (allergies.) (uh huh.)
during that inaugural event in 2005, the doc found spots in my deep gray matter on my brain MRI. nope, that doesn’t indicate MS, my neurologist at the time said. huh. (note, that’s not what they say now.)
I was just so relieved I hadn’t had a stroke or acquired a brain tumor. MS was the optimum outcome at that point in my book. but I was done with doctors by then and opted to forgo the additional blood work that my neuro recommended. I continued on with life as normally as possible. my normal sight recovered after seven weeks. the eye-patch story is always a good cocktail party tale.
enter July 29th, 2011. with a bang.
I was at the beach the night before for a bonfire send off for one of my good friends leaving for Poland! this girl was on a mission to find her happy in 2011. so she did. yeah!! and…she has never been happier. I love getting her weekly emails.
the next morning, I groaned as my alarm started quacking at 5AM. I stretched in bed, like I normally do. but one thing was different and came to my attention quickly. I could not feel my legs.
that’s odd, I thought to myself. I must have tweaked my back in my sleep. I tried cracking my low back, unsuccessfully, so I scanned my body to identify any unusual feelings (outside of the numbness), and found nothing else. my back felt good. I’m used to my every day back pain. this was utterly different, but I quickly convinced myself that it would go away…
I eased up to a sitting position and swung my legs around in front of me. I watched my feet as I carefully placed them on the carpet. huh. can’t feel the floor. that’s strange. but I can move my legs. that’s good. huh. I’ll just ignore it, I’m sure it will go away, I said to myself over and over again. In the shower, I poked my nails into my legs, willing myself to feel something. nothing. huh. I could not feel anything from my waist down. it was like someone had cinched a belt way too tight around my waist cutting off all circulation. ok. I decided to just ignore it. and drove to work (eeek!).
that was a Friday. I didn’t tell my husband until Sunday that I thought something could be very wrong. after ignoring what could not be silently ignored any longer.
Monday I called in to see my regular doc. things were definitely NOT normal. by Monday, I was starting to experience weird sensations. things weren’t numb anymore, but they were. I was feeling things that weren’t there. I had hot and cold sensations on both legs. if I put the bottoms of my feet together, they couldn’t feel each other. it felt like I was disconnected from the lower half of my body.
I couldn’t get into to see my regular doc that day, so I saw the PA in his colleague’s office that afternoon. I tried to explain my symptoms to her…
“it feels like someone injected extra, extra crunchy peanut butter into my legs,” I said as she manipulated my legs, and then tested my reflexes. and asked me what I could feel, and what I couldn’t feel.
she started to look worried at that point, and said she wanted to review this with the doctor.
I was left waiting in the room for 45 minutes with my Angry Birds before the doctor bounded in. I clumsily explained my symptoms again…he stood me up and flipped me around, manipulated my back, and concluded that I had a disc that was herniating.
horrified at this point in time, I asked, “what do I have to do to fix it?”
followed quickly by, “wait, shouldn’t it hurt if that’s what’s happening?”
his reply was, “nope, you’re numb, remember? worst case scenario, surgery, but I want you to have an MRI first to see what we’re dealing with.”
“sure,” I muttered, trying to remember to breathe. I thought he was going to say MS for sure given my history. I can deal with a herniated disc and weeks of PT.
a week and a lower lumbar spinal cord MRI later, I’m at my regular doctor, who was quite enthusiastic to diagnose me before reading my MRI results:
“ok, let me guess, you have extreme pain that shoots down your legs?” he asked.
I shook my head. he looked slightly frustrated.
“you can’t bend at all…” he continued, not noticing that I was still shaking my head.
I looked over at my husband, pleading him with my eyes to take over.
“no, no, it’s not like that at all!” I said exasperated. I then explain all my symptoms, which by that time were ten times worse than the week before. I felt like I was wearing heels when I wasn’t and vice versa. quite frustrating. my feet and legs couldn’t feel each other. and my legs were starting to buzz. my shins were black and blue from running into things. by this time, he had read through my MRI…there was nothing to indicate a herniating disc.
“all right then, let’s send you back to the neurologist.”
he looked at me, and said, “you know, what this could be right?”
“yes, I know,” was all I could muster at that point.
“you have neuropathy,” he said.
huh. that was NOT what I was thinking. but oh well, my Dad has neuropathy. he’s coping ok. I can deal with that over MS.
fast forward six weeks, a visit to the first neuro, an energy healer, a brain MRI later, and yes, surprise…it’s MS. new lesions galore from 2005. and a new neurologist by end of September. finally. initial relief. I’m not going bonkers. unfortunately, the relief doesn’t last for long, and the terror set in again. note to everyone reading…the terror has left me now because I worked through it. with a solid support system. and the MS Society.
that’s my MS story. I wrote this blog 3 1/2 months post diagnosis. even with my symptoms still hanging on. everyone who has MS, has one. a story. it still is amazing to me how similar, but different they all are.