18% patients with Multiple Sclerosis are Misdiagnosed (2019) Kaisey et al

Abstract

U.S. News & World Report recently wrote about a new Cedars-Sinai study that suggests nearly 18 percent of patients diagnosed with multiple sclerosis before being referred to two major Los Angeles medical centers for treatment actually had been misdiagnosed with the autoimmune disease.

 

The mistake with migraine seems a bit odd. I wonder whether this is just a factor of precision generally and whether other diseases have a similar problem? Heart disease?

That sounds familiar. So even if we had a biomarker there may possibly be an element of misdiagnosis. I guess we could conclude from this that nearly 18% of us have something else? It might be a factor of healthcare provision I guess?

 

@arewenearlythereyet autonomic symptoms are common with different types of headaches, including migraines (70%).

I've experienced this myself before ME.

 

Yes i know but surely an mri would have confirmed whether a diagnosis of ms was appropriate by looking for damage ?

 

So they don't include ME even though MS associations recognize that it's a common misdiagnosis.

Talk about cutting someone's nose to spite someone else's face. Dogma is creating a blind spot that can't even be acknowledged, let alone fixed, because of some pissy dislike of a disease.

Brilliant work. No big deal if you just pretend the harmful consequences don't even exist. Keep at it, psychosocial geniuses.

 

You would think, eh? My ME doctor sent me to a neurologist to r/o MS but I was never sent for an MRI, he ordered a long list of blood tests to r/o other diseases.

We need more specialists with expertise in autonomic issues.

 

I'm not sure that catagorizing MS as autoimmune is universally accepted, or even if there is consensus that points that way. I seem to recall a good deal of writings that leaned toward infections of various sorts.

I don't have a horse in this race; I'm just wondering at the almost assumptive nature of the autoimmune characterization in the article.

 

A member of the ME support group I attended early on in my time with ME, said they had initially been diagnosed with ME, but were re-diagnosed with MS.

Is 18% misdiagnosis the norm in medicine? It seems high.

However, there is more, about 40 to 50% misdiagnosed with ME in the two studies cited by ME Research UK: http://www.meresearch.org.uk/information/publications/misdiagnosis-on-a-grand-scale/

Initially diagnosed with ME, some 40 to 50% were re-diagnosed with diseases and conditions such as MS, sleep disorders, primary liver disease, cardiovascular disease, and schizophrenia.

The schizophrenia one really gets me!

 

So, MS doesn't really have a definitive biomarker - MRIs that can be misinterpreted.

There is the lumbar puncture as well - is it not routinely done for MS diagnoses?

I understand it is quite painful, and causes a headache.


ME doesn't have a definitive biomarker either, but combining tests as medicine does with MS could be about as workable as it sounds it is with MS - according to the U.S. News & World Report article.

Given the NK numbers and/or activity, or any other test where abnormalities have been found in ME, what percentage of pwME would have a given abnormality?

Do we know?

Dr. Lily Chu's article lists five tests that ME specialists use for diagnosis, and percentages of pwME who had positive tests for these:

"Testing: We asked about five tests that ME/CFS specialists commonly order to assess their patients – natural killer cell activity, repeated cardiopulmonary exercise test, brain imaging, neuropsychological testing, and tilt table. For each test, about 50% of respondents had never had the test before partly due to cost, insurance coverage, or physician ignorance and resistance to ordering a test. Of those who had any of the five tests, 66% had at least one abnormal result. For natural killer cell activity, 73% noted an abnormal result; for tilt table testing, 77%."

http://iacfsme.org/portals/0/pdf/FDA-AugustFinalReportforUS-Version2.pdf

 

How awful for people to be taking drugs they don't need - getting side effects from them, and not being treated for their real disease!

And, the financial cost!

 

Not a huge surprise if disappointing. I have multiple white matter lesions but the distribution is is not typical for MS. According to my neurologist its commonly whats found in migraines which i have only barely.

 

I think the title of this thread is a bit misleading as it suggests that 18% of patients with MS were first diagnosed with something else. But as I read the abstract it's about patients who were given an MS diagnosis falsely because they didn't satisfy the McDonald Criteria. So they didn't have MS after all. I've heard that migraine can in some cases look the same as MS on an MRI scan, so perhaps that's why this was the most common alternative diagnosis.

 

I suspect that most of those weren't diagnosed with ME but rather not properly investigated, delayed diagnosis instead of misdiagnosis, because of suspected ME, which advises to do no testing at all.

Which of course is just as bad, since prompt treatment is critical in MS to prevent irreversible damage. As it is with us, but whatever.

 

@rvallee

Do you mean delay, and no testing for UK patients, or the US patients noted in the U.S. News World Report?

Of course, it could be both groups. Even though the CDC outlines how to diagnose, and treat some of the symptoms, I would bet this guidance is slow to catch on.

I think I'm correct in recalling the US used to have guidance that said no testing after ME ("cfs") was diagnosed. It was probably the same in Canada, and elsewhere, but I can't recall Canadian direction re this. Of course Canadian physicians often follow the CDC guidelines.

 

Yes, that surprised me, too. I personally know two other pwME and out of the three of us two were initially misdiagnosed with MS (MRI scans and all). Anecdotal I know.

So looks like I've gone from being one of the 18% misdiagnosed with MS to one of the 25% house- or bedbound with ME. Don't you just love being a statistic!

 

I’m sure I remember reading somewhere that migraines can also cause lesions on the brain, which might explain where the misdiagnosis comes from.

 

I find the schizophrenia misdiagnosis most interesting,is there a bit of common pathology?if there’s a link to Autism in M.E then maybe as there’s a genetic link to Autism and schizophrenia
Digeorge syndrome has a T cell fault and a large increase in schizophrenia
And I saw Nottingham university studying the link between MS and schizophrenia

And I saw a paper asking is MS really a neurocristopathy not sure that gained any traction
https://en.m.wikipedia.org/wiki/Neurocristopathy

 

I see all kinds of problems with this.

The biggest problem is that having a diagnosis of MS is not the same thing as having the disease process underlying MS. We can't really directly measure the disease process itself, only the various telltale signs it leaves on measurable biomarkers. If you look at a bunch of people who received their diagnosis based on relatively loose criteria, then of course, some of these will not meet the diagnosis if you make the criteria more restricted. They may still all have the same underlying disease process - perhaps at different levels of severity and stages of progression.

Who knows, maybe the looser criteria will turn out to be more valid - better at picking out those who have the MS disease process from those who do not.

In other words, this 18% has a lot to tell you about the way MS is diagnosed in different places, but relatively little to say about which criteria are better, or what the real underlying rates of "misdiagnosis" are.

 

According to Cedar-Sinai the risk of developing MS has a genetic predisposition and environmental factors also plays a role.

We have had cluster 'outbreaks' in the city I live in with people who lived in the same neighbourhood.

 

Damn.