Why Spokane's infamously high MS rates may be nothing more than a self-fulfilling myth

Nicholas Deshais

"The tests, the doctor said, had come back negative. It was a shock to hear, the kind of shock that follows life-altering news. Especially news that comes out of nowhere. Before she got angry, Heather Audel-Neal was just very, very shocked.

“You don’t have multiple sclerosis,” she remembers Dr. Michael Olek telling her. It’s hard to say if she was as shocked as she had been when, lying in a hospital bed, she was told that she did, in fact, have MS. That was, after all, four years ago.

Four long years in which she had lost a career she loved. Four years of extreme fatigue, as she planned her three or four good hours a day around her kids’ school schedules. Four years, it turned out, of not having MS.

“You had a stroke,” Olek told her.

“Would you have ever called this MS?” she asked him.

“No.”

Sitting beside her husband, who was quaking with anger and battling tears, Audel-Neal stared at Olek, struggling to make sense of the words coming from him.

“Well, was my case just really tricky?”

“No.”

As the region’s only trained MS specialist, Olek has delivered similar news to more than 100 people in the year he’s been at Rockwood Clinic. And he’s come to a rather startling conclusion: Spokane doesn’t have an abnormally high number of MS patients.

Decades of being told that Spokane has the second highest prevalence of MS in the world, and the region’s new MS specialist says that it’s nothing but myth. That a lack of training and expertise led to a number of misdiagnoses. That the myth perpetuated itself, with patients and physicians swayed by the reputation. That we’re as normal as we can get when it comes to MS.

“I don’t think we have an epidemic here,” Olek says. “The numbers show a high incidence [of MS]. But maybe the numbers aren’t correct.”

Audel-Neal, sitting in Olek’s office last March, freed of MS, asked him one more question.

“What do I do now?”

Olek’s office is tidy but cramped and doesn’t give the impression that he came to town with big plans. But he did. For one, Olek hopes to turn Rockwood Clinic into a fully functioning MS center, a one-stop shop for patients. There’ll be physical therapy, clinical trials, routine check-ups, orthotics. It’s a monumental change from how Rockwood, with its various locations spread around town, currently does things.

In the meantime, while he proves that such a scheme is profitable, he works from his small office. Two walls are dotted with seven diplomas from institutions like Harvard Medical School and the Philadelphia College of Osteopathic Medicine. There’s a rubber brain on a bookshelf, in front of rows of books on MS. There’s a picture of his dog, Charcot, named after the French neurologist who first identified the disease in 1868.

Olek himself had no personal ties to the disease when he embarked on his career — he didn’t know one person who had it. But he was a medical student with a thirst for research. In 1993, after a few of years of neurology internships and residencies, the excitement surrounding MS — thanks to a new oral treatment, which ultimately failed — compelled him to focus on the disease. He became the clinical neuroimmunology fellow at the Brigham and Women’s Hospital at Harvard and never looked back.

He stayed at Harvard until 2002, treating TV host Montel Williams, among others, before moving to the University of California at Irvine and the University of Texas Southwestern at Dallas. In November of 2007, he landed at Rockwood Clinic.
As the clinic’s only MS doctor, he set about to review the case of every one of its 800 patients.

He focused on four things — the only indicators he needs to re-diagnose or un-diagnose his patients: The patient’s history, an MRI, a spinal tap and a visual evoked potential exam. He says the accuracy rate for diagnosing MS is pretty high with these criteria. “Ninety-nine percent of the time, if all of those line up together.”

So far, 500 patients have lined up for an examination by the new doctor. Olek estimates that he’s re-diagnosed 20 to 30 percent of them. That is, about 100 people who thought they had MS before Olek came to town don’t think that anymore.

Those misdiagnosed with MS are still sick, he points out. They have something. It could be as ordinary as migraine headaches, trauma, high blood pressure or diabetes. Or as serious as a history of substance abuse, lupus or, like Audel-Neal, a stroke. They just don’t have MS.

“When people have a chronic condition and they’re told by one doctor one thing, another doctor another thing, it’s difficult,” Olek says. “Is [my re-diagnosing them with something other than MS] going to impact the patient’s health? I don’t think so.

Fortunately, the medicines that are available for MS, even though they are injectable, are relatively benign. They don’t have any long-term effects. I’ve taken patients off medicines. I don’t think that’s had a big impact on their health. Psychologically, it may.”

As for why there’s such a large number of misdiagnoses, Olek believes it’s a combination of three factors. First, he says many patients weren’t given a complete work-up when they were originally diagnosed. Second, the lack of MRI technology severely limited what tools doctors had when diagnosing some of the area’s MS patients. Lastly, and perhaps most frighteningly, Olek says the idea that the area had a high prevalence of the disease perpetuated itself. . . ."

...continued: http://www.inlander.com/content/news...ly_exaggerated

Cherie

This line stood out like a sore thumb in the article for sure. I'm glad they went on to give an example (Copaxone) of a situation where a mis-prescribed medication DID have a harmful effect on someone.

thank you mon Cherie, the thing that stuck out for me was before i was DXed, they ran all those other test lupus crohns diabetes and a number of others, my thought is why is there such a discrepancy in how one is tested? I spent 7 yrs going back and forth to er and over night stays at hospital,to be told I had this I dont have this, its in my head.....but that last time I had a headache so bad, they had to keep looking and found the MS, there are procedures for almost every medical thing they do, yet this isnt the first time I have heard something like this. you think there would be some universal order of test prior to releasing an MS dx, just to rule out the other things, yeah i know cost and time issues blah blah blah, if you are that sick I dont think cost should be a concern, and yes I am in medical debt till 2090, just seems that b4 you tell someone they have some incurable illness, they should have all their ducks in a row first

True on the ducks in a row quack quack, too bad they cant figure out my ducks uggggggggg, wow..interesting article... thanks for sharing, sarah

Hey Cherie~ as usual you have provided something really interesting here. There has been an article in the papers here and for No IL that anyone who has a firm MS DX, to please contact a certain #, as they feel the incidence in my county to as far as Sandy, Jim, Wiz, Frank and Deb have an unusual # of MS DX's.

So, this article you posted was truly interesting and I thank you for taking the time to post it for everyone.

The message I got from this article was that you get the right diagnosis if you do it the right way.

I think that even this 99% figure is overly pessimistic. I do not think that there are many folks with lesions in the right places, the right symptom history, and a positive spinal tap results and abnormal evoked potential results walking the face of the Earth with Misdiagnosed MS.

jackD

exactly Jack nero the neuro told me this too about the MRI's, some can be hidden deeper and not be seen, he says the MRI is a good tool, but is just a tool. I understand the illness mimics so many other situations, so that does add to the troubles of being DXed, just wish they had a sure shot type of test,

The potential ramifications of this are mind-boggling, not only for people in the Spokane area, but for those who will experience the ripple effect.

Thanks for posting this, Cherie.

I couldn't determine if I had chills or shock when reading it. Definitely sadness. I cannot even begin to fathom how someone would feel to hear that they no longer had MS - or rather, that they never had it. Of course, as the neuro states in the article, none of this changes the person's actual physical health. Though, in the case of that one woman, when she stopped copaxone, she felt better. No word though, however, how her health truly is now - and if she is just "better" all around.

It all just reminded me of when I went to Hopkins last June. When the doctor first walked in the room and asked me what he could do for me - my response was "Tell me that I don't have MS" - to which he responded that I did, in fact, have MS.

I was diagnosed solely from one physical exam and MRI results....all done the day I met with the neurologist for the first time - which was all within two weeks of noticing any symptoms. When I started learning about MS (within a day of the diagnosis), I learned that this was more uncommon and was always worried and questioned this - why didn't I have any of the myriad of tests out there? I think I always silently thought that it must be a mistake...and that one day I would wake up and this nightmare would be over.

One year and a few days later, I'm still waiting for that day...

~Keri

It's scary. I had a friend who was told she had MS 10 years ago.. only to be reassessed 9 months later by a different neurologist who said there was no way in heck she had MS. I'd have to ask her for specifics of what testing was involved.
Luckily she had taken NO medications for the 'MS'... however she did live her life for 9 months thinking she had MS. I forget what it was that she was re-diagnosed with.