i knew… not that it was easy, still


Out of curiosity, I’m often going around finding stories of how people found out they have MS. It usually starts with an oddball symptom (blurry vision in one eye, weakness on one side) coming out of nowhere. You think it’s a temporary nerve problem… and when your doctor tells you it’s MS, and that you might even have to stay in the hospital a few days (depending on level of acute treatment, or if you need more tests run), all hell breaks loose. Life has suddenly gone from mostly normal to code red.

For me, though… it was different. Of course, I teach anatomy and physiology at the college level. I also do some side work in rehab Pilates and exercise. Shortly before my diagnosis, I worked at a Pilates studio with a client with relapsing remitting MS. In fact, she had almost no visible symptoms, despite having had the disease for decades–we had to work around dizziness and balance problems, and that’s all. (I occasionally had the same issues, but had attributed it to lack of sleep…)

One day (shortly after working with this client–who ended up leaving the studio because her life was too full and busy–good omen for the rest of us!), I was out for a run after work, and a normal route took a lot longer than usual. Not only that, but my left leg collapsed underneath me every step I took. Weird. I kept going, but thought nothing of it later, since my leg returned to normal for the rest of the day.

The following day, I took a yoga class, and balance on my left leg was BAD. I’m not talking “I’m having an off balance day” bad; my leg was nearly a noodle. I started getting suspicious.

The next day, I walked with a slight limp most of the time, due to weakness rather than pain. Going forward a few weeks (was originally sent for a lumbar MRI–my low back is better than an 18 year old’s–moral: do Pilates and yoga!), I took an old brain MRI into the neuro that I see for migraines. (I had one done by someone else in ’05, when I was initially treated for headaches.)

At this point, I with my background had been thinking: leg still mostly weak, but there are three major nerves affected (peroneal, femoral, sciatic). What could cause weakness in all of those nerves? The MRI didn’t show any kind of tumor originating in my lumbar/sacral/pelvic region that could press on all three. So, unless it was something extremely rare that I didn’t know about… MS was my only option to be causing my symptoms… Yes, I pretty much had self-diagnosed this elusive disease before seeing my doctor.

I sat down across from my neuro as he looked at images on his computer screen (turned away from me). His face went somber. My first thought was, “OMG! Is it something worse than MS? Do I have terminal brain cancer? Do I only have 6 months??!?!” I spent a good 30 seconds freaking out, heart rate skyrocketing.

But no… all along, I had been right. (Whew. Relief, that I “only” have MS.) Frustration and anger that the neuro that I was seeing in 2005 didn’t catch the MS that had been unraveling even back then. But the past can’t be changed.

Yes, I knew that I had MS, even before my doctor’s official declaration. Did that make it easier to accept? Maybe, I don’t know. Definitely less of a shock. I still sobbed on the drive home from that appointment (being by myself was… easier? harder? hard to say) because you need to every now and then under these circumstances… but then, I picked up and moved on.


7 Responses to “i knew… not that it was easy, still”

  1. 1 Rhonda

    I’ve been following your blog since you began. I was told I had MS 2 years ago.. a consistent weakness in one leg and my inability to run were my symptoms. For years I trained and strengthen the leg muscles to no avail !! After a sport specialist couldn’t work out the problem a neurologist did after I just started to explain my problems ! Ironically once i started to learn more about MS i began to realise all my symptoms were straight from the manual on MS !

    • Hi Rhonda, good to see you here!
      Same thing kind of happened to me, to a lesser degree. Last summer (which was prior to my big flare-up) I had some spare time to really get into lifting weights again. I was trying to start an upper body progression……. but my arms were making no progress at all. I was lifting my little heart out, and I saw no results, and could never make any increases. Now, I look back and think… of course!
      (And now, knowing more about MS and my body, I’ve made other changes that have slowly improved my strength. Hooray!!)

  2. Okay Ladies, I was just TRULY annoyed when I told my Neurologist that I was planning to do some strength training so I can do the MS Bike Event in a few years (loooong term goal) when he said, “exercise is OK, but don’t expect to get stronger.” WHAT??? How could he?!
    Now that I read what you ladies are saying…should I erase the nasty voice-mail :/ (just kidding)

    • Wow, seriously? I mean… even if it *were* true (which I do NOT believe), why would you ever tell a patient that? Maybe tell them/us to not expect the same strength gains we had in the past (which has been true for me), but I still have gotten stronger. Just more slowly.

      This has been a pet peeve of mine… aside from the lousy bedside manner of some of the practitioners, hardly any of them know what it’s like to live with the disease day to day. If it weren’t such a time and money investment to go back to school, I *would*, just so I could be a dietitian or PT assistant who *knows* what MS and autoimmune disease is like. I know I’m not too old to go back to school (I have some students returning in their 50’s), but with a chronic disease and paying for said chronic disease…. sigh.

      • Brooke, I know right?
        Well, I’m still determined to get stronger. I’ve just got too many reasons NOT TO.
        We’ll just keep workin πŸ™‚

      • πŸ™‚ In my health class on Wednesday, I talked about the benefits of positive attitude on health. I was pleasantly surprised at the number of students who agreed with me, and had anecdotal evidence in support of positivity improving their immune system and strength! So… nyaaah to the nay-sayers, hmmm? πŸ™‚

      • It’s always good to know that the kids…youth, are on the right track. Next time tell them about my doctors dumb statement.

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