Article: Why hundreds of patients a year are misdiagnosed with MS

[TLC_31]

The Oregonian reports today on a study by Oregon Health & Science University and the Portland Veterans Affairs Medical Center. Of 122 MS specialists to respond, “more than 95 percent said they saw at least one patient in the past year diagnosed with MS by another medical provider, but the specialist ‘strongly felt’ the patient had some other disease.” The study author indicates that doctors may lean too strongly on MRI findings.

Personally, I had a lumbar puncture before diagnosis (after an MRI), and four MRIs since, and there’s nothing in my eight years since diagnosis that indicates I would have been misdiagnosed. But this serves as a reminder, especially to those not responding to treatment, to be aware that even outstanding doctors with the best intentions can make a mistake. And yes, there are a few crummy doctors too.

http://www.oregonlive.com/health/ind...reds_of_p.html

[rdmc]

Well that's a minefield of info that's sure to stir up some discussion.

My main problems with the article are these:

He makes it sound like patients insist on taking the DMDs even though they've been advised against them. Now how do those patients get the DMDs...last I checked a doctor has to Rx them...so doesn't the doctor bear some of the brunt of the blame, if indeed that's happening.

So psychiatric problems are responsible for 1/5 of us diagnosed with MS...not going to touch that one with a ten foot pole...just a little "oy" that's going to make things much easier to get diagnosed

That's also going to go over big when you have a lot of folks who were originally told they had psychiatric problems, only to find out after years that they did actually have MS.

And in the last paragraph it makes it sound like the interferons are "poison" but if the patient wasn't so set on getting an MS diagnosis, there'd be some magic pill that could help them. If that was the case, how come so many folks sit in limboland, offered no medication help from docs. There is no "treatment" that could help those that are "misdiagnosed" because if they are indeed misdiagnosed it's because the doctors don't really know what the problem is....so how can they treat it.

The article gives me the impression that insurance companies don't want to cover meds...since that seems to be the jest of the article, how much the meds cost and they might be unnecessary. Interesting comments after the article.

Thanks for posting, like I said, I'll be interested in hearing other's take on it.

[spoiledbrat]

Thank you. This article was very informative. I wish I fit in the category with people who have potentially been misdiagnosed. I have been to two different neurologists in two different states. My first potential diagnosis came without an MRI. The confirmation diagnosis was done without an MRI as well. Then after my first MRI it was just reconfirmed. I was perfectly healthy and had no complaints prior. Geesh, what I would give to be told I had Lyme disease or something that can go away!

[Redwings]

He makes it sound like patients insist on taking the DMDs even though they've been advised against them. Now how do those patients get the DMDs...last I checked a doctor has to Rx them...so doesn't the doctor bear some of the brunt of the blame, if indeed that's happening.

The article says, "Poser speculated that marketing of the newly approved β-interferon had created a 'therapeutic frenzy' that further propelled misdiagnosis. 'I found that some patients referred to me with the diagnosis of multiple sclerosis had already been given these drugs, irrespective of the clinical characteristics of their disease,' he wrote."

The Oregonian article doesn't say anything, anywhere about patients pursuing or being set on a diagnosis of MS, or about patients asking for meds. So the blame is being put solely on the misdiagnosing/prescribing doctors.

As someone who was misdiagnosed with MS and spent 4 years on expensive medications that did harm me -- 4 years during which I was deprived of proper medication for the condition I do have -- I know from experience how valid the viewpoint of the study's coauthor given the the last paragraph of the article is

Without knowing all of the medical details (and how to interpret them) of all of the patients these MS specialists felt were misdiagnosed with MS, no one is really in a position to judge the validity of their assessments (hopefully the peer-review process did that) or the researchers' motivations. Apparently these specialists aren't saying that the misdiagnosed patients have nothing wrong with them, but rather that their presentations are more logically explained by other conditions.

I have to speculate about why a patient would be so invested in having MS -- or someone else having MS -- that they would view the lack of confirmation of their diagnosis as someone with bad intent trying to take away their identity or deprive them of some entitlement. Misdiagnoses occur all the time. I'm not one who believes that identifying misdiagnoses is a bad thing. For me, it was a good thing. I think even Martha Stewart would say, "It's a good thing."

[rdmc]

The Oregonian article doesn't say anything, anywhere about patients pursuing or being set on a diagnosis of MS, or about patients asking for meds. So the blame is being put solely on the misdiagnosing/prescribing doctors.

As someone who was misdiagnosed with MS and spent 4 years on expensive medications that did harm me -- 4 years during which I was deprived of proper medication for the condition I do have -- I know from experience how valid the viewpoint of the study's coauthor given the the last paragraph of the article is

Hey Redwings,

I see your point, but this was the paragraph I was referring to:

"I have also noted that many patients who receive β-interferon do not have multiple sclerosis, and some patients started to take the drugs even after they were told that I could not confirm the diagnosis of multiple sclerosis."

The drugs were prescribed by the doctors, but the blame seems to be laid on the patient because they started to take the drugs even after the non diagnosing neuro didn't confirm the diagnosis.

I've never been in that position, but I have read of folks on the board where one neuro says yes MS, and prescribes, the next neuro says no MS and the patient is left in a quandry of which neuro to believe and which route to pursue, med or no med.

[lusciousleaves]

It would be informative to see a study on how many go undiagnosed and for how long before it's eventually confirmed. My guess is there are far more undiagnosed that should be than misdiagnosed that shouldn't. Doing nothing can do as much harm, if not more, than doing the wrong thing.

There is an elephant in the room that never seems to be addressed. Can't remember who posted it or what study, but that 30% of people with negative MRIs were misdiagnosed with MS. This means that 70% of those with negative MRIs were correctly diagnosed. Now they let the 70% go without treatment to avoid misdiagnosing the 30%. These numbers suggest the lack of MRI evidence is weighted against PwMS that have negative MRIs to salvage the lower number of patients that were confirmed later to not have it.

Which group would you rather be in?

[mommy1]

Are they including the people with CIS who are taking CRABs to prevent clinically definate MS? Strange article. I do not get what they are trying to articulate. Are they concerned about patient well being or healthcare/medicare cost containment?

[candycane]

even with positive spinal tap?

Can a person be misdiagnosed even with having had a positive spinal tap?


I think we'll be seeing more "undiagnosing" just to save money. It's disgusting.

Thanks for the article link.

[Sir-Voor]

This thread/that article explains why my new neurologist (Who happens to be a MS specialist) wanted a copy of my 10-year old spinal tap results.

With so many mimics and with symptoms being so random, I guess we should not be surprised.