Hmmm . . . misdiagnosed?
 

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

Do it right!!
 

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.

I personally believe that a good MS Specialist can tell just by a clinical exam what Neurological disease you have. People have been diagnosed before MRI's, before LP's, before VEP's were used for testing. :)

They just use these tools to support their findings or for proof to our ins companies, so they will pay for drugs and treatments. JMO
Lady
**************************************************
You are not your MRI

Don't Feel Doomed

MRI applies only indirectly. You may benefit eventually from new research, but that's a slow process. More likely, your neurologist may use MRI to assess whether your treatment is helping you adequately. Accordingly, your neurologist may be motivated in part by your MRI to make changes in your treatment.

MS is a mysterious disease of frustrations and paradoxes. There are many blank spaces left in science's understanding of this disease. That's where hope may reside.

MRI doesn't tell your fortune. Lesions change over time, sometimes for the better Even when the actual nerve, not just its coating, has been damaged, brains can learn new tricks and so can you. Don't feel doomed by your MRI. It's simply a picture of how your brain was on one particular day. It might not be any more lastingly important than wearing mismatched socks for a formal portrait.


© 2002 Real Living with Multiple Sclerosis

http://www.mult-sclerosis.org/news/A...otYourMRI.html

Hi Frank,
 

I have a question of sorts... I have had constant headaches since I was 17. They came on suddenly after I had laser eye surgery. I was assured they were not related to the surgery.

The last time I was hospitalized for my ms my headaches were so bad I wished they would just put me out of my misery. I was told by neuro that ms does NOT cause headaches. Told by another neuro that ms CAN cause headaches.

So which is it... and how do you know????? Do you, Frank, or anyone, have any feedback on this?

Thanks.:grouphug:

nero the neuro told me the same and then in same breath said if its a spinal lesion they can cause those ON attacks and or the severe headache

I've never had a spinal MRI. I was just curious what you dr had said. It would be nice if they all had the same (correct) info.

My headaches have been such a mystery for over 30 years. Each doctor I went to would say something different. Meanwhile I still have them. But they do seem to get much worse when my ms symptoms are acting up.

Thanks.

have you poked your head in the ON forum http://neurotalk.psychcentral.com/forum105.html

was just thinking maybe read some of the post and see if someone else describes what you are going through. they have an injection and 8 months ago I knew what it was called, its to help with the ON headaches, I do not get them a lot but when I do, ice is my best friend, my cousin lives with headaches 24/7, it isnt easy,


(sorry for the derailment of the thread, now back to our regularly scheduled program)

And yet...those of us who struggled for years with various sxs...lesions on the MRI...and still neg. lumbar puncture and neg evoked potentials...who get various dx thrown at them, along with medications that make us sick...
and then, when sxs start piling up, to be finally told it is MS, are somewhat relieved...
MS is an elusive disease process...so hard to definitively diagnose...should a neuro keep ignoring the mri lesions appearing, and the sxs, because all the ducks aren't in a row?

Seems he might have a bit of a GOD complex going on, doesn't it? I wonder how many people have gone to new Neurologists since he came to town. :eek:

However . . . I really do hope his new dx is correct, and that there are a lot of people in that area that are no longer living in fear of their future.

I wonder if he makes everyone go through all four tests? I bet even I wouldn't fail them all ... or at least I wouldn't have 5 or 6 yrs ago, and by that point I already had MS for 14 - 27 yrs. That obviously doesn't mean I don't have MS. :cool:

Not that one is necessary, but I wouldn't let him do a spinal tap anyway . . . so does that mean I could go back into denial? :)

Cherie

If you want my honest opinion, yes headache/migraine CAN be a part of MS. They can exist independently, however my MS is almost completely sensory, and when I'm in pain it's not below my neck. It's head pain.

I thought it was migraine or headache for so long, and then wondered why it was that taking huge amounts of OTC medications wasn't helping, and the pain would increase as the day dragged on.

Once I was diagnosed with MS, the 2 years of headache/migraine misery disappeared after the steroid treatments. Hrm, interesting.... my last relapse, the head pains returned.

I have head pains now again. I have to take Clonazepam to cut through the pain I have. It does help however, where OTC drugs (Tylenol and Advil for example) didn't do anything to help.

So yes, I do think that headache/migraine can be related to MS, and I'm walking breathing proof of it :(

Hi Laura,
Where on your head do you feel the head pain? Just curious. I get it on the very top at times, or sometimes in the back of the middle of my head, where the two low skull bones are (and glands under them). It may include the back of my neck (brainstem area) in the mix.

It worsens with a relapse and steroids help after a month. Clonazepam daily helps when it is not too bad.

I always have sinus headaches when they are bothered by infection and twice a year a Migraine that puts me to bed in the dark.

There are so many kinds. Which do you have if I might ask?:)
Lady

:)

Aren't there newer studies/reviews that say headaches are a part of MS for some people? I've always struggled with headaches and migraines. About 9 yrs ago, a neuro sent me for an MRI of my brain and it showed an "UBO" - unidentified bright object. He dx me with "pseudo-tumor" and told me to lose weight and he gave me meds. No idea if at all related or if onset of MS. Don't remember the name of neuro or where I had the MRI! Bummer, wish I could get my hands on it, just to see if anything else was actually there (well, besides for my brain that is).

~Keri

There's something about the nature of MS that makes the undiagnosed wonder if they don't really have MS, and the diagnosed wonder if what if they DON'T have MS but some other "mystery diagnosis" disease that only 1% of doctors have ever heard of.

It's all so confusing. I can't help but think of the people who will hear about this and start another round of second-guessing. And how many friends and relatives will call their MSrs and say, "I just read this and you might not have MS!"

Golly, I didn't know there was an ON forum. Thanks, Frank!

I can see how this could cause anxiety in a lot of people a lot of different ways. Gosh, to be treated for MS for years and years, especially taking one or more of the DMD drugs, and then to be told you actually don't have MS but something else would be awful. Then again, it would be good.

In that case, I think I would doubt everything the doctors had told me from day one!

My head pain most of the time, extends from the top of my skull on the left side, down to my temple (left side) and under my left eye. It can also involve my top row of teeth on the left. I also get similar pain on the right, just not as frequently and it seems to center around the ear and outwards into the temple/eye area.

The left side is definitely the most problematic. I almost never have pain in my forehead. I had a 'true' headache recently and was almost surprised to feel what a true headache feels like... this is quite different.

My dentist diagnosed Trigeminal Neuralgia and I'm certain I had attacks of the 'classic' type years back. Now what I think I'm dealing with (and my neuro agrees) is Atypical Trigeminal Neuralgia.

I'm affected by this type of head pain almost daily. To differing degrees. Since I quit smoking in September, I've been in pain with the head. But at the end of the day, I quit smoking, so I can suck up the head pains and eventually my body will untangle itself :)

That's exactly what I was saying! If a doctor said I didn't really have MS, would I end up with something worse? Or end up in eternal limbo, unable to work, feeling lousy, and saying to my friends and family "Yes, I'm really sick, but no, they don't know what's wrong with me."

I already spent a couple of years lying there at night crying and thinking "What is WRONG with me? Am I nuts?" I'd sure hate to go back to that.

I have never doubted myself I have always been a very positive person, until they started telling me to see a shrink, I started to question myself and what if I am nuts ok nuttier,

my darling wife never lost faith in me she knew something was wrong with me, she saw my decline in energy and stability, i even told her i am gonna get Parkinson cause my left arm shook, my vision was going and the test showed little to no need for glasses back in 06 by 07 bi focals:yikes:

the doubt the docs created in me cause they had no answer was wrong, now someone should of, somewhere after 32 ER visits, figured it out why did it take my first ON attack to make them think harder and find it, even my GP knew it was something more but was boggled guess cause I am a guy thats part of it, and was a pretty healthy person in good shape and all, except for the 4 constant SX's i kept having, that was one docs excuse was i am a guy they never suspected it, I for one am pretty sure assuming any thing medically can be a very dangerous way to think and practice medicine

I agree, Polar.

It sounds like this guy IS determining the cause of the patient's medical issues (stroke, migraines, etc.), although he doesn't say if he has for ALL the patients he undx. :confused:

Frankly, I'd take many dx over MS . . . but not all, for sure.

Cherie

Me, too..I call hangnail!:D

I'll claim the toenail fungus! (mostly because I took care of that two weeks ago..and it's finally healing very nicely)

WOW I understand he is a big specia;ist but the numbers that he re diagnosed seems insanely high. I wonder if any sought a second oppinion from other MS Specialist

Itust seems strange to me that he rediagnised so many usually you hear the people are back in limbo not given a diffrent diagnosis/ Iso wonder what he would tell me. My lp did not rule it in or out right now i cant remeber the term

Sorry but i find his numbers quite high if all these people went thru all the testing. I was not diagnosed quickly it was over a 4 year period. I wonder the percentages of other MS specialists telling people they dont have MS

Good luck toall.
laurie f

can I have dandruff instead? I can fix that! :rolleyes:

I agree although as a diagnosed person while I wish I didn't have it there wasn't and still isn't any denying it imo. :(

My biggest concern related to the article is that those who have not accepted their diagnosis will have this to further muddy the waters.

Wow, just a couple of months ago I wondered aloud to my MS neuro if I really had MS (since I feel so much better after being on Tysabri). He looked at me and said, oh you definitely have MS.

He trained at Mayo in Rochester so I feel confident in his opinion, plus I've had the symptoms in virtually every part of my body at one time or another.

Interesting article though, and we wonder why so many doctors are hesitant to dx MS.