It's far too easy to misdiagnose MS; a disease named for its symptom (many scars) and diagnosed by neurologists. Neurologists have supposed eminence in MS diagnosis, which I believe has created a huge blind spot towards vascular evidence. More on eminence vs. evidence based medicine
Maslow's theory also comes to mind: "If all you have is a hammer, everything looks like a nail."
Dr. Andrew J. Solomon, neurologist from the University of Vermont College of Medicine, has been publishing on this problem for many years. He is lead investigator in a new study on MS misdiagnosis, presented at the recent AAN conference in Vancouver. link
Dr. Solomon's latest study was just published online in Neurology. Twenty four American MS specialists reviewed the cases of 110 patients who were misdiagnosed with MS, gave them correct diagnoses and then published their results.
According to the study findings, 72% of the misdiagnosed patients (Edit: that's 79 people!) took medication to treat a disease they didn't have, some took these medications for many years. Four of the patients misdiagnosed with MS had participated in clinical trials for experimental MS therapies.
"This study suggests significant and long-term unnecessary risk for these patients," Solomon says.
Some of the treatments for MS carry serious side effects. One drug, taken by 13 percent of the misdiagnosed patients, can cause a potentially fatal brain infection, Solomon says. (Edit: 14 misdiagnosed patients were given Tysabri!) Other patients suffered from the discomfort and inconvenience of daily injections, others experienced side effects from medications, and finally, they lacked treatment for their actual correct diagnoses.
Here's a recent news story, where two women took the neurologist who misdiagnosed them with MS to federal court. These two women filed separate negligence law suits against Dr. Gary M. Weiss, a former Vail Colorado based neurologist, who misdiagnosed them with MS using his own MRI lab, and them put them on MS drugs. One woman was wrongly given over 100 infusions of Tysabri. Over 20 of Dr. Weiss' MS patients now claim they were misdiagnosed. link to news story Shockingly, Dr. Weiss is still treating patients, as a practicing neurologist in Florida.
Maran Wolfston, an MS patient and doctoral student, investigated her neurologist when she felt he was pushing her use specific MS drugs. She later published her revelations. Her neurologist first encouraged her to enroll in a clinical trial, and after she declined he told her she would need to begin Tysabri infusions. Sure enough, using the Dollars for Docs site sponsored by Propublica and thanks to the Affordable Care Act, she could search her neurologist's payments from pharmaceutical companies. (You can, too! Link to Dollars for Docs ) She discovered her neurologist was receiving major payments from Biogen--the sponsor of the clinical trial he had recommended and maker of Tysabri. She has published a paper on the result of her "loss of trust."
There is no similar monetary incentive for the diagnosis of vascular disease. Neurologists only consider their particular "hammer" of immune modulating drugs and then they assert their eminence. And patients are too intimidated, sick and overwhelmed to ask questions.
Here's more from the lead neurologist, who also published in 2012 Link to "Undiagnosing" MS. Dr. Solomon half-heartedly tries to rationalize the hair-trigger response in prescribing drugs:
In patients diagnosed with MS, prompt initiation of treatment with immune modulating therapies is often appropriate, so, notes Solomon, "There is pressure to make the diagnosis of MS early, and to start patients on MS therapies quickly. But in some patients who do not meet rigorous standards for diagnosis, waiting longer and close follow-up may determine the correct diagnosis."
Making sure the diagnosis is correct and waiting seems like the best idea. Many studies now show that starting patients early on MS drugs might decrease relapses, but makes no difference in long term disability or MRI results, so why not wait to prescribe Tysabri or mitoxantrone??
Better still, why not first address the more common cardiovascular causes of white matter lesions, and truly make MS a diagnosis of exclusion?
White matter lesions on MRI, a supposed "hallmark" of MS, appear most often in vascular conditions. These conditions include antiphospholipid syndrome (Hughes Syndrome), migraine, stroke, and transient ischemic attacks. Any of these vascular conditions---which all involve a disturbance of cerebral circulation and hypoperfusion--can exhibit white matter lesions on MRI.
White matter lesions on MRI are up to 500 times more likely to be related to vascular disease than MS. link The idea of MS lesions being related to the vasculature and slowed cerebral blood flow is not new. link People with MS have cerebral circulation 2X slower than healthy controls. link
If you know someone who has recently been diagnosed with MS and questions their diagnosis, or if you have questions regarding your own diagnosis---please--go through the list of differential diagnoses with your doctor or get a second opinion, especially before taking any disease modifying drug. link
And if you have any vascular issues, like hypercoagulation, blood clots, migraine, high blood pressure, obesity, TIAs, stroke, high inflammation (C reactive protein) or venous disease---please, talk to your doctor about addressing these issues. If there are vascular commorbities, there is a chance that in addressing vascular problems you may never require disease modifying medication.
Be a patient like Maran Wolfston---be knowledgable, ask questions, do your research.
Be that patient (or caregiver) almost every neurologist dreads.
Make them roll their eyes.
Trust me, the momentary embarrassment is worth it.