Tuesday, June 23, 2015

I’m Off to the National Institutes Of Health…

Just wanted to check in lest anybody think I vaporized or otherwise met with misfortune. I’ll have to keep this relatively short, as I’m scrambling to get ready to go to the National Institutes of Health (NIH) Clinical Center, in Bethesda Maryland. The NIH is the US government’s primary medical research organization, and they maintain a state-of-the-art clinical complex on a sprawling campus just outside of Washington DC.

I’ve been seen by the doctors/researchers at the National Institutes of Health (NIH) three times since 2009, when I was part of an NIH study that sought to identify patients with clinically definite multiple sclerosis so that these patients could be used in future MS trials. The NIH conducted this study because they had found the misdiagnosis rate of MS so high in some of their previous research efforts that the number of wrongly diagnosed patients were skewing the results of those trials. In some cases up to 15% of trial subjects were ultimately found to have diseases other than multiple sclerosis. Yes, this number is alarmingly high, and if you think you might be misdiagnosed I wrote an action-packed Wheelchair Kamikaze essay on the subject a few years ago, which you can read by (clicking here).

Being nothing if not pure of soul and kind of heart, I of course had only the noblest intentions for joining the trial, wanting simply to help further the exalted cause of science. Okay, before you’re overcome with nausea I’ll admit to other, less altruistic motives which might have played just a teensy weensy role in my schlepping the five and half hours from New York City to the wilds of the nation’s capital for a medical workup. I’d long suspected that I had, in fact, been misdiagnosed and I knew that as a subject in a study designed specifically to identify clinically definite MS patients I’d be getting a thorough going over by the world-class neuroimmunology team at the NIH, the prospect of which my obsessive impulses quickly latched onto, like a lonely nebbish wrapped around the finger of a femme fatale. Jeez, what an awful metaphor…

Okay, so maybe I’m not so pure of soul and kind of heart, but a selfish bastard interested in nothing more than me me me! Holy Mother of Moses it feels good to finally come clean! By 2009, just six years after my initial diagnosis, I had already been in a wheelchair for a year and despite undergoing all kinds of treatments both mainstream and alternative I was only getting worse. So, yes, I was desperately seeking answers, dammit, and I was dead set on getting them come hell or high water. There, I said it, and I’m glad I said it! Hey, stop looking at me that way or your face will freeze.

After several days of intense poking, prodding, zapping, and scanning, the assembled big brains at the NIH concluded that indeed I did not fit the diagnostic criteria for any form of multiple sclerosis, though they couldn’t come up with any reasonable alternative diagnosis either. Drats! I floated the idea that I might just have a severe case of the cooties, but the esteemed physicians quickly shot down that notion, too. Double drats! An unsatisfying result, to say the least, though the doctors did state that some weird form of MS certainly couldn’t be ruled out. So, as I’ve written previously, my doctors and I have agreed to go with an unofficial diagnosis of PPMS, which in my case stands for the Peculiar Paralysis of Marc Stecker. And, no, I won’t stop making that joke, because it’s just so damned clever.

Now, six years after our first journey to Bethesda, Karen and I will be packing up a rented wheelchair friendly van on Tuesday for yet another sojourn down I-95 to the NIH. Well, actually, Karen will be doing most of the packing since I'm, you know, a complete freaking gimp. I will, though, be driving my wheelchair with reckless abandon around the van as she packs it, in an attempt to keep away the roving hoards of New York City's notorious ne'er-do-wells, these days composed primarily of Wall Street bankers looking to suck every last dime from an almost extinct middle-class…
As I recently detailed in “Attacked by a Three-Headed Beast” (click here) my disease has been giving me quite the thorough ass whupping for the last five or six months, with my neurologic problems compounded immensely by an endocrine system gone berserk and a degenerative bone condition that delights in making my hips and shoulders feel like they are made out of red hot razor blades and shards of glass. Last month I contacted the good doctors at the NIH and told them of the situation, and they invited me to come down for another good going over. This time around I’ll be seeing not only the neuroimmunology team but also their endocrine doctors, and I’ll be getting an extensive series of MRIs and whatever other medical tests are deemed necessary. We’re scheduled to return to NYC Friday evening.

I’m hoping that now with all of the elements of my physical decrepitude apparently coming to a head, something will finally show itself that will elicit a flicker of recognition in at least one of the assembled NIH doctors and researchers and we’ll finally start to unravel the mystery of me. My hunch is that my endocrine problems may be playing a much larger role in my physical mess than was previously thought, a possibility that both my top notch New York City neurologist and endocrinologist agree needs to be explored. The general consensus now seems to be that I probably do have some form of progressive MS, but also some widespread systemic dysfunction that is making my body go kablooey.

Yes, in my case kablooey is an official medical term. In all probability my pituitary gland and/or hypothalamus has gone completely kablooey, which has in turn made the rest of my endocrine system absolutely whopperjawed, leading to a mishmash of messeduppedness that has left me feeling like absolute dreck, weak as a batch of watered-down hooch, muscles as wasted as Dean Martin on a bad night, and down about 25 pounds in only the last three or four months. I have lodged an official protest about all of this with the Cosmic Complaint Department, and if I don’t get some satisfaction soon somebody is going to get a severe tongue lashing, the likes of which hasn’t been seen since Groucho Marx made his introduction to Margaret Dumont in “Duck Soup”:

Yes, if my disease doesn’t want to leave in a taxi, it can leave in a huff. If that’s too soon it can leave in a minute and a huff… One way or another, though, it’s gotta go. If it’s one thing I can’t stand it’s a horrendous, crippling illness that overstays its welcome like a houseguest who’s searching the cupboards for more Cheez Whiz while you’re putting on your pajamas. Jeez, what an obvious metaphor…

I’ll report back upon my return from the hallowed halls of the NIH…


  1. You got me with the Cheez Whiz- I'll be a fan of your writing for life. And you spurred some research - do you know it has been suggested you can use Cheez Whiz as hair conditioner and shaving cream? Safe travels and let Karen do the driving, ok? Good luck with this round at NIH, here's hoping they crack your case once and for all.

  2. Good luck, Marc. You + Groucho = forces to be reckoned with. Let's that ol' team at NIH work their magic to finally find some positive answers for you, ones that will rewind the hands of time and bring you back some wellness! I'm praying for it. Please keep me posted.

    BTW, I wasn't sure which reference to Groucho you meant. I thought since you were traveling it'd be "Hello I Must Be Going" but what you used was even better!! Ah, Margaret...

    Safe travels and I'll look forward to hearing what you found on this journey.

    Best to you and your wife~
    Cathy Chester

  3. All the luck in the world to you on a diagnosis for your many adjective ailments! If my belief in eventual cosmic balance is true (and I have to believe it is), you will be a mighty mighty emperor in your next life. Or healthy. That's even better.

  4. Good Luck Marc! I was diagnosed 9 years ago with MS, it took 8 and half years and five different neurologists to find one that correctly diagnosed me with NMO. Never stop trying and never stop hoping!

  5. It'll be interesting to see how you get on Marc
    Too many are told its Ms when all Ms means is multiple scarring, it's a description not a diagnosis
    Much more work needs to be done by many of the fat wallet neuros and pharmas in my opinion

  6. If you can patent the 25 lb loss mechanism, I'm in! It is no fun to be the chief anomaly among anomalies. But, you do it well.
    Maybe the real answer is to spread the Cheez Whiz all over your body and I will let your imagination figure how to get it off. Anyhow, good luck and keep us informed.
    Love ya,

  7. Best to you and I can't wait to hear your summary upon your return. I was misdiagnosed for over 20 years, including 2 knee surgeries , all of the usual tests , including a spinal tap. A brain MRI finally showed lesion and a diagnosis of PPMS. Thanks for all you do.

  8. Reading your post is like reading a modern telling of man's frustrated attempt to find meaning in our struggles. It reminds me of one of my favorite poem written in the 19th century:

    A man said to the universe:
    “Sir, I exist!”
    “However,” replied the universe,
    “The fact has not created in me
    A sense of obligation.” (Crane, 1899)

  9. Good luck Marc. I love following your writings and wit.. I suggest it to to others…. Heating up in beautiful British Columbia and my PPMS is sorely suffering. I EXIST? Listening to the beautiful song birds, Monarch butterfly and frequent humming birds. Full Moon tonight with Venus and Mars in flight. Got to love it and the gratitude. I am going to buy some cheez whiz tomorrow and slather it all over my body. Take care and good luck.

  10. Hope your trip is fruitful and you find some answers. Looking forward to hearing all about it.