Friday, January 27, 2012

Waving the White Flag: A Turn of Praise

Okay, I give.

This is what I will tell my neurologist in late February. A week ago, I reported an increase in pain, all kinds of pain: Musculoskeletal, neuropathic, existential, do-something-doc-even-if-it’s-a-cyanide-capsule-I’m-not-feeling-too-picky despair.

But that’s not all. Muscle spasticity; need I elaborate? You know the ropes on this one. You sit for a length of time, an hour, perhaps, and when you stand up, your legs suddenly stiffen and you go up on your toes, lurching to and fro like a palsied bantam rooster.

Though I usually set my course straight ahead for the door (the ultimate goal being the kitchen where there is some very strong Starbucks espresso roast), I wind up making a sharp right into a wall of book shelves. The titles that usually cascade off the shelves and onto my bare feet include Jokes and Their Relation to the Unconscious by Sigmund Freud. I won’t even go there.

I’d gotten away with 20 mg a day of baclofen for two years, only doubling up on days when the spasticity worsened—and those days were few and far between. Except for my last two weeks in physical therapy a year ago, when my order ended and I no longer enjoyed the luxury of getting professionally stretched for 30 minutes prior to therapy. It took only one day for my legs to seize up after I stupidly decided to ride the recumbent cycle. Quickly I rose to the level of my incompetence. I stopped showing up for my three days per week workouts with Bill, my retired pro weight-lifter turned P.T. I think Bill would have understood. Or he would have clocked me on the head with a hand weight, I’m not really certain. After all, it wasn’t his idea to ride the recumbent cycle.

Thus began a vicious cycle of trying to do yoga at home, only to spend the next few days with horrific stabbing pain in my groin, pelvis, and thighs. Then I would up the baclofen for a day or two to relieve the pain—and become too weak to hold a yoga pose—for which I would then cut the baclofen to 20 mg for more strength—and wind up injuring myself again. I stopped trying to exercise after that. No pain, no pain. Simple.

Two months ago I noticed that 20 mg of baclofen just wasn’t cutting it anymore. I took 30-40 mg for relief and then decreased the dosage as I usually had, but I couldn’t tolerate the stiffness, pain and cramping that had suddenly spread to my arms and hands.

My spinal issues worsened as well. A month ago, when all the pain was at its peak, my neck pain (compliments of a herniated cervical disc, spurs, and nerve compression) suddenly hit such a high pitch that I began to pace the floors, my mind racing in agony. None of my old tricks worked anymore, not the heating pad, the stretches, not even Vicodin, which just made me nauseous. I almost went to the ER, but I possess a Stoic gene and it demanded that I try one more thing: Go to bed and lie down on that memory foam contour pillow. I did, and after two hours, the pain was quiet enough to let me sleep.

I won’t even go into the mid-back and lumbar pain, nor will I whine about the acute stabbing pain in the groin and pelvis that began to pop in once a month or so the year before last, as though the Pain Police had decided to conduct random visits to make sure nobody in my household was feeling well for too long.

And so we come to the neuro appointment. Wouldn’t you know it, as soon as I made the call for an appointment, I began to feel better. I mentioned this to her at the beginning and joked that I should have called her a month ago and saved myself a lot of pain. She laughed a lot at this, we had a nice little chortle together. “Yes,” she joked back, “give a ring and tell Laurie you’re just calling for the pain relief.” We’re getting off to a good start. Laughter does heal—for a while.

After I read off the litany of symptoms I had suffered since my last visit, she prescribed Lyrica for the neuropathic pain and gave me a new script for baclofen with a larger dosing schedule. As of now, I am so weak from the 60 mg of baclofen and so dizzy from the Lyrica that I walk with my body bent at a 90 degree angle, crashing into furniture and doors, stepping on my little dogs’ paws, and spending most of my day in a chair in front of the computer—which exacerbates my neck pain. I cannot cook an egg without sinking into a squat. I cannot shower without sitting on the faucet to rest.

My neuro also reviewed my willingness to get the intrathecal baclofen pump and recalled that another of her patients had tried titrating up to 100 mg a day of the oral stuff and finally gave in, having been rendered nearly incoherent and quadriplegic in his ability to communicate and to move. Having had the pump surgery, he is now dancing down the streets and provides speech therapy to stutterers, and can’t believe he waited so long. Hm.

She also ordered three MRIs and reviewed my willingness to take Gilenya. I will wait until my MRI results come in before I consider this step, but I’m fairly certain what my decision will be. I can’t ignore the evidence. My symptoms are worse, and if the lesion load has increased, well…

And so, my dear friends (you are indeed dear for sticking with me through all the dense narrative!) I give. I see pump surgery in my future—and a new disease-modifying therapy—and this is the topper—another $3,500 in out-of-pocket expenses for this new benefit year.

The treatments I once reviled as dangerous and invasive I now embrace as my next last resort to battle MS. The enemies of my enemy are my friends. And so I praise them.


  1. You mean ignoring all the little signs doesn't work to make the MS behave? Darn it! I thought you and I had this beat by sticking our fingers in our ears, humming loudly, and pretending our MS doesn't exist. Sorry this approach has stopped working for you.

  2. So well written, as always Kim ... but sooo sorry that you're in such a horrid rough patch :(
    Big, but gentle hugs heading your way!
    Carol xo

  3. ps... Excellent title too.

  4. Laura, LOL. I thought I was on easy street there for a while. My original plan for this year was to treat my symptoms and wait for BG-12 to be approved.

    But MS had another plan in mind. The little devil!


  5. Carol,

    All hugs are welcome. Bring 'em on, I can take it :-)

  6. Buon Giorno Kim

    Thank you for the correct link. You write well. Not at all a dense narrative. Stoic genes, good to hear - I'm assuming southern Italian ones?

    I like your spirit. Take care.



  7. Hi, Grace,

    Thanks for reading and commenting, glad you dropped in!

    Yes, southern Italian on my dad's side. You must be, too, Italians can spot a siciliana a mile away :)

    Hope to hear more about your progress on WebMD.


  8. "I wind up making a sharp right into a wall of book shelves. The titles that usually cascade off the shelves and onto my bare feet include Jokes and Their Relation to the Unconscious by Sigmund Freud. I won’t even go there."

    love it!


  9. Hello Robyn!

    Thanks for dropping in, my dear.

    Freud was such a card. He loved a good practical joke. If he only knew!

  10. Hey Kim,

    First, I want to introduce myself, my name is J Heeg aka (54sunflower), I have been following you on the MS community listed on Web MD and also listened to you on MSRadioLOL. Want to thank you for all the comforting information you pass on to others, as I have been in the closet with my MS until this past fall when it came out really hard. I guess that is what i get for trying to not recognize it as part of my life, it threw me for a real wammy. I clicked on the link you posted a few day ago and was really surprised to find this site. Your topic you wrote about this Friday sounds like you were describing my month of January, the only part left off was I developed shingles 3 weeks ago. The pain I have from the MS spasms, the swelling of my fingers and wrists from my RA, and a remergence of my Fibro was not enough for me, I had to get shingles on top of it all. As in your blog, I too kept putting off calling my doctors, hoping the next day will be better. It wasn't until my husband noticed a rash on my left lower back I decided to see my family dr. Today is a better day, I was looking at my next Neuro and Rhemo Dr's appointments and they are scheduled for the 6th & 9th of Feb...... maybe when I get in to see them, I will not have any pain... well I can only hope :) Thanks again for all the work you do

  11. Dear J,

    Welcome, and thanks for the kind words! Glad you dropped in and shared your story.

    Sorry to hear about the shingles and RA, you certainly had a full plate without those problems. I hope you'll get your issues under control and find meds that will make you more comfortable.

    And, I hope to see you on WebMD :)