Time For Me To Fly

I get that health care is really a misnomer for disease management and I’m fine with that. I’m also okay with being in charge of my own health and wellness while allowing my doctors to be in charge of my ailments.  I’ll happily explore things like nutrition, yoga, and other lifestyle choices on my own, but when it comes to my disease I expect, no, I demand, that my doctor know more about it than me.

Keeping the above in mind I’d like to bitch a little about my last neurological appointment. Understand that my neurologist isn’t a big ball of fire. He pretty much told me I had MS in the same way he would’ve ordered a shot of wild turkey with a beer chaser.  He very matter of factly told me what drug I should take, gave me some web sites to browse and instructed me to come back after I’ve been on my meds for a month which is fine.  I don’t need him to be my friend, I just need him to be damn good at his job.

Last week was only the 3rd time I’ve ever seen the guy and clearly our relationship hasn’t progressed to the point that he remembers me and my disease progression off the top of his head.  There’s a lot of shuffling of papers and rereading of notes when I stop in for a visit which honestly, doesn’t last very long. But each time I pop in, I seem to have a slight increase in symptoms that although aren’t earth shattering in the big grand scheme of MS indicators, are a change for me.

This month I reported more fatigue in my legs, some numbness in my feet, continued word finding problems, a feeling of urgency before urinating and being itchy as all hell from my Copaxone injection to which he replied, “Uh huh.  That’s all pretty common.”

Normally, I would’ve pressed him – no one likes to feel like they might piss their pants while forgetting the word “bathroom” – but the clock was ticking so I decided to spend my remaining moments discussing the new CCSVI info with him.   I knew it wasn’t going to be an easy sell, being such a new idea in the field of MS and all, but being that I’ve got a disease that he manages, this should be right up his alley.

Right?  I mean, I have Multiple Sclerosis.  Every neurologist on the planet with a web site, lists this disease as something he or she manages.

So you can imagine my shock when I, a housewife from Frederick, Maryland, made the realization that I knew more about CCSVI than my neurologist, otherwise know as, my DISEASE MANAGEMENT SPECIALIST!

The dude had never heard of it!  The look on his face was eerily similar to look on my mother’s face back in 1980 when I had to explain that REO Speedwagon was a rock group and pronounced R.E.O. and not Rio, like the Brazilian city.  At least that conversation made sense.  She was an adult with a love of Doo-Wop and  I was a 6th grader who hung out regularly at the National Record Mart.  Why the hell would she know what REO stood for?

But this guy’s my neurologist! Why the hell wouldn’t he know about shit that’s going on his field? Granted, the vascular system isn’t his thing, but Multiple Sclerosis is!  Medicine tells me that a neurologist is my “go-to-guy” on this.  That means that if a proctologist in Rio discovers that clinching one’s ass cheeks while listening to “Take it on the run” decreases the incidence of Multiple Sclerosis, he better damn well know about it.

I was so taken aback, I actually forgot what CCSVI stood for.  I quickly regrouped and viewed this SNAFU as an opportunity and began to explain the high correlation between folks with MS and certain veinous abnormalities when he walked over to his computer, went to the National MS Society’s web site, and started clicking around.  Here’s what happened next:

DMSD (Disease Management Specialist Dude): Oh here it is. (Finds CCSVI listed on the NMSS web site)

Linda: The University of Buffalo has a study underway in an attempt to replicate Zamboni’s results…(Feverishly trying to make this information sound scientific, valid and for God’s sakes American)

DMSD: Um huh… (Continues to click around the site while pretending to listen to me)

Linda: What’s really amazing is that Zamboni’s MS patients experienced decreased symptoms after angioplasty was performed on their veins

DMSD: Oh, I see, now, this is just another new idea that may lead to some discoveries in the future. (Exits out of web site and continues with my neurological exam in a very, this conversation is now over, sorta way)

I’m happy to report that I didn’t cuss him out or pull the rubber plexor out of his hand and check to see if he had any reflexes near his scrotum. I didn’t go into the diatribe I had planned about why pharmacological “maybes” in the world of MS are more acceptable than one from the vascular world, like I did in my last blog post. In fact, once I realized that our conversation had ended before it actually started I decided to calmly (and with only two cuss words) throw out one last tidbit of information.

Linda: Hey Doc, getting back to the CCSVI stuff.  Just so you know, people are pissed.  There’s been no media coverage in this country, so folks are banding together.  Some of the most thought provoking information out there is on Facebook of all places which doesn’t say a lot about the more official web sites that have to do with MS. What you need to realize is that people are undergoing risky medical procedures like inserting stents in their veins by specialists that might know a lot about the vascular system but don’t know shit about MS, so you might want to stay up on this information ’cause I guarantee you, your MS patients are.

DMSD: Um…okay…thanks.  (Insert awkward pause here) So you’re looking good.  Honestly, I don’t see any reason that I can’t wait and see you in about a year?

At which point I reminded him that if I wait a year to see him I’ll be 6 months overdue for my next MRI – you know that little thing he needs to see if the expensive drug I take is actually working.

DMSD: Oh yeah, you’re right.  Okay, I’ll see you in 6 months.

I thanked him for his time and made sure to shake his hand because, my ass he’s going to see me in 6 months.  The way I see it, I have 6 months to find another disease management specialist dude or dudette to work with.

For the first few days after that appointment I was halfway between really pissed and close to tears, because what I learned last Wednesday scared the crap out of me.  Turns out that health care isn’t even a disease management system.  It’s a symptom management system and since my symptoms aren’t that bad there’s not much to manage until my symptoms get worse, which really freaks me out.

I thought my doctor was supposed to help me AVOID as many symptoms as possible, not just manage them when they pop up.  Why not see me monthly or even quarterly and work with me so I stay as healthy as possible instead of putting me on the back burner with instructions to only call if I have a problem?  I have MS!  Of course I’m going to have problems!  The question isn’t if, but when and to what degree.

I thought I had a partner that was going to use his medical knowledge to keep me as healthy as possible.  It just sucks to realize that this isn’t the case at all.


6 responses to “Time For Me To Fly

  1. You should have grabbed him by his tie and held onto it while you asked your questions.

    • Can I tell you – I SOOOOOO thought you of and the “doctor tie grabbing incident of 1998”. In your defense, you were very pregnant, very diabetic, flat on your back and he was almost out the door. You did what you had to do. I truly believe to this day that doctor NEVER attempts to leave an exam room without first asking his patients if they have any questions/concerns.

  2. Wow, Linda, I had no idea you were going through this. Of course, I’ve been so out of touch and wrapped up in my own drama to see what’s going on outside my window. I just read your last post, and I’ve always felt that big pharma is at the root of all research and FDA approvals. Zamboni’s (loved the reference to Canadians and Zamboni) research suggests a single procedure with some follow-up and regular check-ups. That’s nowhere near the $82 per day you’re shelling out for the company jet and “symposiums” in Bermuda. Stay on it. Find someone young and idealistic and willing to drink in all the research they can. And if that fails, Italy’s a nice place to make an extended visit. 🙂 Good luck to you.

    • Thanks Lisa – Actually, I’m feeling good and luckily have time to wait all of this out (and yes, I have considered an Italian vacation/consultation in my future if need be). I don’t hate Big Pharma – thank God for all the great drugs out there, including the ones I take. They’re a business and should make as much money as they can – I just don’t want their business plan to get in the way of my personal health plan or an open dialogue with my doctor.

  3. Yes … it’s freaky. Until i was diagnosed I had almost no interaction with the medical system, and was horrified as it slowly dawned on me that it is, as you said, “symptom management system and since my symptoms aren’t that bad there’s not much to manage until my symptoms get worse …”


  4. Kudos to you Linda for taking control of your own health – although knowing you I wouldn’t expect anything less!! This schmuck obviously didn’t know who he was dealing with!! I’m sure you will be able to find a doc that you feel more comfortable with. There out there – it just sometimes feels like your trying to find that needle in a haystack!!

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