Sunday, October 9, 2011

Good to go for another six months

It's been more than a week since the most recent neuro checkup but life has gotten in the way of blogging about it.

In preparation for my first meeting with my new neuro who happened to also be the lead investigator in my clinical trial I had kept a calendar with scribbled notes of symptoms and issues I'd been having since August 5th. I felt I'd been having my first relapse (and no matter what anyone might say, I still believe it). I thought he would be interested to know.

I transferred all these scribblings from calendar to notepad and organized them so that I could recite all the pertinent information in chronological order and give him an overview or all the crap I'd been dealing with. It started with the 24 hour bug that had me so dizzy and nauseated I had to crawl on hands and knees to go toss my cookies in the bathroom.

Then it was on to a couple weeks of nearly bedridden fatigue. I defy anyone without either chronic fatigue syndrome or MS or some other disease that will flatten you face first to the pillow to try and comprehend what this is like. You can't. It's like you have suddenly fallen victim to an invisible monster who weighs a ton and sits on your chest pinning you to the bed. Any effort to resist or fight against it is futile.

When the fatigue started lifting after a week or so, I had that buzzing, funny-bone-whacking feeling in my groin again. I'd had this a year ago and underwent a battery of tests from CTs to ultrasounds, only to have it disappear before anything was every found. This left me feeling that it was most likely MS.

Well, it was back with a vengeance and I had to use my cane for 2 weeks lest my leg go unexpectedly out from under me. When that sensation occurred, it was without notice and would lock my leg up much like giving your elbow a good solid whack on the nerve will momentarily cause that (not so funny) buzzing whilst simultaneously locking your limb up and briefly rendering it useless.

I never knew I had a funny bone in my groin area, but sometimes MS is weird like that. Making it nearly impossible to define the symptom and explain it to anyone. Even my doctors (who have big labels on my files that say "CAUTION: EXTREME HYPOCHONDRIA" no doubt) will just look at me quizzically and nod, smiling. That infuriating, placating, condescending smile.

That's pretty much how this whole visit went. I thought I was coming armed with all kinds of documentation of my first ever relapse since starting the clinical trial for Fingolimod (now Gilenya) over four years ago, and he was just nodding and smiling. Never asked a question.

Instead he whacked my knees with his rubber triangle hammer, had me follow his finger with my eyes, stick out my tongue and walk across the room. He rubbed my left ankle and right cheek simultaneously and asked if they felt the same. I resisted asking him if they felt the same to him. "No, one feels like my ankle and the other feels like my cheek."

I knew what he meant but felt he needed a little help earning his pay, so a little playful obstinance couldn't hurt.

Then he said "Well, it looks like you are doing so well we don't have to see you for another six months! Isn't that great!!?"

And I just sat there. I couldn't meet his level of cheerfulness at this news without asking, "That's it? No blood work to check my liver? No urine?"

And he just smiled that dopey smile and said "Nope. You're doing fine. What I think you had there last month was a little viral stomach thing that just aggravated old symptoms. You didn't really have a relapse. You are doing so well and have been on this so long that we can just see you again in six more months."

Now some folks would say that was a great visit and why am I complaining.

Part of me wants to just take the same freakin' happy pill my doc had eaten and say what the heck and be done with it.

But most of me has alarm bells going off and wonders why, if this drug has only been on the market for a little over a year, and I've been taking it for a little over 4, and long term affects are not know, then WHY wouldn't you do routine blood work? There are possible issues with elevated liver enzymes -- I actually had one occurrence of that during the trial -- and so at the very least double checking that might be in order, no?

And he didn't seem at all interested in the fact that I'd had a breast cyst and had to have it aspirated. I had a surgeon try and talk me into a biopsy but chose to wait three months and have a repeat mammo and ultrasound.

I'll be scheduling those this week.

This drug works in ways that I obviously don't have the education nor background to fully comprehend, but I do know that it sequesters T-cells in the lymph glands. I do know there are lymph glands throughout our bodies. They couldn't tell me what that cyst's contents were as it contained too few cells to determine.

So, I'm happy that my doctor was so happy with all he'd seen at our visit, but I didn't leave there feeling all warm and fuzzy.

Maybe it's just the hypochondriac in me, but I'm still waiting for the other shoe to drop.


  1. Seems to me that you are not acting like a hypochondriac. Given the fact that you had a flu bug that kept you in bed for over a week, he should have ordered blood tests to check your lymphocyte count.

    I hope that all your exacerbation issues (psudo or not) have resolved.


  2. I completely understand and empathize with your frustration here--SOME of us are powerfully attuned to our bodies, and I have yet to meet a doctor who truly GETS that--that understands that some of his or her patients actually do have insights into their own situations that can shave time and procedure off the work of diagnosis and treatment. And in your case, potentially assist the "experts" in tracking what is obviously a more-than-promising treatment. You'd think they'd do the freaking blood-work if only to continue to measure efficacy.


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