(If you haven’t already done so you should first read Part 1)
September 14, 2004: Diagnosis
My husband Mick and my brother John came with me to Edmonton for my appointment with Dr. Warren. John was just recovering from an MS relapse himself at the time, so he could come along for moral support and help us find Dr. Warren’s office.
Dr. Warren’s office was straight out of the 1970’s, not even joking. All harvest colors and (homely) homey.
Dr. Warren was already an elderly man then, as in ‘you-must-love-your-job-how-are-you-not-retired-yet?!’ elderly (he didn’t retire from practice until 2012). He was polite and deliberate and to the point.
He had me walk ahead of him so he could watch and assess my gait, then had me walk heel-to-toe in a straight line; stand on one foot, arms out, close my eyes (if you’re thinking ‘that sounds like a sobriety test’, you’d be correct). Dr. Warren then tested my reflexes, dragged a bigass pin from heel to toe on each foot, smacked a tuning fork and then pressed it to each of my feet one at a time and had me tell him when I couldn’t feel the vibration anymore. Had me follow his finger with my eyes.
The single most unexciting, non-technology-assisted assessment and examination in the history of ever.
And at the end of it he said, “Yes. You have MS. We’ll order an MRI to confirm that but in the meantime we’ll take care of this flare. Here’s a prescription for Solu-Medrol 500mg IV to be given at your local ER every day for 6 days, and also a prescription for a 6-week taper of prednisone to be taken starting the day after you finish the Solu-Medrol. Go and speak with one of my nurses for further information.”
Just like that, I was officially diagnosed with MS.
So we spoke with a nurse for a few minutes and she said the usual: diet doesn’t really have a quantifiable effect, exercise is good, enough sleep is crucial. Haha. On learning I had a 7-month-old baby, she was disappointed that I hadn’t breastfed as they think breastfeeding has some protective effects to not drop the hormone levels so quickly (ooh wow, there will definitely be more on that subject in the next blog post). She said that a big percentage of patients first diagnosed with MS are moms with new babies. Makes sense, right? Can’t think of a group of people more sleep-deprived, stressed, and literally sucked drier than new moms.
So then we were done and out and what to do now? Lunch, of course. On the way there, it hit me: my one hypothesis is true!
It is LIGHT YEARS easier to deal with a diagnosis for yourself, even when it’s kind of a bleak one that doesn’t have a cure, than it is to deal with your child being diagnosed with something unknown and potentially difficult for them. A THOUSAND TIMES EASIER.
As I’ve said before, autism is only a different wiring, not a disease by any means and not actually, technically comparable to MS. Autistic people are brilliant and wonderful. And different. And the world doesn’t yet appreciate different. Which is scary for parents. And some parents don’t deal well with scared, so we worry. And worry some more. For years. And freak out and make ourselves literally sick over it before we even realize how much that can potentially affect us and WE WOULD NOT EFFING CARE, anyway, because “IT’S ONLY ME”.
“Oh hell, bring it, I can deal with THAT.”
(Actually you can’t and you’re not doing anybody any favors, as I previously noted in Part 1)
Overestimating my ability to control my emotions (🙄), I tried to talk about this with Mick and John at lunch and that may have been the first time I cried that day. Previous to that I was relieved and happy that I had a diagnosis of MS and hadn’t wasted Dr. Warren’s time, after all, but then trying to articulate how different and better this felt than when Jacob was diagnosed with autism I nearly bawled my head off in a nice restaurant.
Nearly. Luckily, Mick and John are guys and didn’t do that ‘Awww, Honey 😥’ face girls do that makes me launch straight into Ugly Cry™. Instead, they may as well have done this..
…so rather than exploring my feelings further (thank heavens), I pulled my shit together and we went and had fun.
It was a truly lovely day, actually – we did bumper boats and mini golf and laughed until we couldn’t breathe.
And I went to the ER the next day and started Solu-Medrol which has to be given as an IV over an hour or two (any faster and it burns like hell).
John was the biggest help and source of useful info for those first days. He warned me to chew gum to counteract the godawful metallic taste a person gets when taking Solu-Medrol, he told me to hit up a doctor for a sleeping pill prescription so I’d get any sleep at night (Solu-Medrol is related to prednisone: all have the side effect of being very much AWAKE), and best of all he was my babysitter – Baby Hannah loved hanging out with her Uncle John! They had a great time! At the end of those six days Hannah had been introduced to, and was officially addicted to, McDonald’s fries.
Thursday, September 16, 2004: first time I had this conversation.
I bumped into a lady in the ER who asked why I had an IV in my arm.
Me: “Solu-Medrol to treat MS.”
Her: “How long have you had that?”
Me: “Since Tuesday. Well okay, since July, I guess. Diagnosed on Tuesday.”
Her: “oh my gosh, it took my friend YEARS to be diagnosed!”
Me: “Well, my brother has had it for a couple years so it was easier to spot when I got it.”
Being the baby of the family sometimes has some weird, unexpected perks.
So the Solu-Medrol and prednisone completely fixed my symptoms (did so within the first week, really).
December 2004: MRI to confirm diagnosis
Again, because I’m *me*, I was pretty sure it would come back as nothing and they would find it wasn’t MS at all.
A young MRI tech was sweet and chatty when I went in, and oddly quiet and distant when I got out – “your doctor’s office will contact you for an appointment.”
As I left the room I looked over my shoulder at the computer screen. COOL! An image of presumably my brain had blotches of pretty colors! If I hadn’t already guessed from the MRI tech’s altered demeanor, ‘pretty colors’ are not good news..
Dr. Warren’s non-technological examination had been correct – official, MRI-confirmed diagnosis: relapsing remitting MS.
“RRMS – the most common disease course – is characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks – also called relapses or exacerbations – are followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may disappear, or some symptoms may continue and become permanent.” (from the National MS Society)
I was put on Copaxone, an immunomodulator medication which is a big word meaning ‘regulates or moderates the immune system’. Copaxone is a once-a-day injection that has been shown to reduce the number of relapses by about 30%. Which sounds like not much but I was still having two relapses a year; without Copaxone I would have probably been having them 3 times a year.
Any time you have a relapse there is no guarantee that you’ll regain 100% of your function. I did, though, every time for the first few years; typically the tingly numbness would start in my right foot, over a few days the numbness would work its way up, once it passed my knee I’d develop a limp, I’d do a round of prednisone, and I’d be back to normal for a few more months.
March 2010: Uhh.. crap.
I went to see Dr. Warren once a year for a checkup and renew my Copaxone prescription, and his nurse checked each year to make sure I wasn’t developing lipoatrophy – “a visible dent at the injection site can occur due to the local destruction of fat tissue”. Although “destruction of fat tissue” sounds like a good side effect that one would theoretically be overjoyed to have, in reality one cannot accurately control or predict which fatty deposits are going to be destroyed. Therefore, one’s fatty deposits end up looking even more like the surface of the moon than the cellulite did originally. Oh, and also, lipoatrophy is kind of (totally) irreversible and permanent.
Guess what the nurse found in March 2010, thereby immediately and unceremoniously yanking me off of Copaxone?
Coincidentally, minutes before, I had requested to be transferred to a neurologist in Red Deer so I wouldn’t have to travel so far – apparently the new neurologist would get to put me on a different medication, too.
Oh, and by the way, I wanted to possibly have another child…
~ to be continued ~