Frequently Asked Questions
the risk of being misdiagnosed with MS // recommended resources //
telling the difference between MS and Lyme // the problem with testing //
guidelines on what you should do right now // FAQs updated regularly
Q: What are the odds of being misdiagnosed with multiple sclerosis?
A: Recent scientific studies have found the odds of being misdiagnosed with the demyelinating disease are surprisingly high. One research study put the error rate at nearly 20%. Another study found it took an average 4 years to catch the error (33% were misdiagnosed for over a decade), and most (70%) had initiated disease modifying therapy to treat their nonexistent MS. The National MS Society published this article about other MS-mimicking conditions to rule out. But even this article conflicts with the aforementioned studies, as the #1 condition most often misdiagnosed as MS isn’t even listed: migraine (16%).
Q: What about Lyme disease specifically? Could I have that instead of MS?
A: Yes. While you technically could have both diseases at the same time, Lyme disease is particularly problematic, as it can mimic MS seamlessly according to the National MS Society. “Lyme disease can cause delayed neurologic symptoms similar to those seen in multiple sclerosis (MS) such as weakness, blurred vision caused by optic neuritis, dysesthesias (sensations of itching, burning, stabbing pain, or “pins and needles”), confusion and cognitive dysfunction, and fatigue. Lyme disease symptoms may also have a relapsing-remitting course. In addition, Lyme disease occasionally produces other abnormalities that are similar to those seen in MS, including positive findings on magnetic resonance imaging (MRI) scans of the brain and analysis of cerebrospinal fluid (CSF).” https://www.nationalmssociety.org/Symptoms-Diagnosis/Other-Conditions-to-Rule-Out/Lyme-Disease
Q: That sounds exactly like multiple sclerosis. How can doctors tell the difference, and doesn't testing rule out Lyme disease?
A: It’s complicated. Neurologists believe there are ways to identify the different diseases by telltale signatures on MRI or in cerebral spinal fluid. And testing accuracy is controversial. Diagnostic tests for Lyme disease typically look for Borrelia antibodies in the blood or spinal fluid—signs of a current or past infection—which means that even if the result is positive, you may or may not have an active infection. However, I was tested for Lyme three times during the 17 years I was carrying an MS diagnosis, and all were negative. Studies have found testing for neurological Lyme particularly problematic. Columbia University, a leading research facility for Lyme disease, discusses the challenges of diagnosis and “…not everyone with Lyme disease will test positive on currently available tests (e.g. only 70-90% sensitive in neurologic Lyme disease).” If traditional FDA-approved testing for the neurological versions of Lyme is in fact flawed on some level, additional testing is unlikely to provide any clarity on whether someone does or does not have the disease. Other laboratories offer Lyme disease testing using methods and techniques that have not, to date, been sanctioned by the FDA and therefore are not covered by health insurers and can run in the hundreds to thousands of dollars. A positive test from one of these facilities is unlikely to be recognized by most traditional medical providers, rendering these tests, for all intents and purposes, moot.
Q: So, I might have Lyme and existing tests might not be able to detect it. Or I might be misdiagnosed and have another condition altogether. What can I do right now?
A: The issue of misdiagnoses in multiple sclerosis is a global problem, with or without the question marks surrounding Lyme disease. For the immediate future, I would first recommend getting copies of all your medical records (neurological, primary care, and other specialists) as well as copies of all laboratory findings, from lumbar puncture results to CDs of your MRIs. Second, even if you are working with a seasoned neurologist, get a second opinion, ideally with an MS specialist. Due to the significant odds of a misdiagnosis, this is warranted even a decade or two (or three) after diagnosis. A separate pair of eyes may land on a key clue overlooked. Third, and this will be the most challenging, I ask for patience. I am researching and writing as fast as possible. By the end of SDBR, I expect to provide patients and specialists with a much better roadmap to confront the issue of Lyme disease and misdiagnosis in MS.
Q: Where can I research and get more information on Lyme disease?
A: Here are three reputable sites to further research Lyme disease.
ILADS (International Lyme and Associated Disease Society) is a nonprofit, international, multidisciplinary medical society dedicated to the appropriate diagnosis and treatment of Lyme disease and its associated illnesses. https://www.ilads.org/
LymeDisease.org empowers individual patients by educating them, amplifying their collective voice, and providing research tools like their published big data surveys and the MyLymeData patient registry. https://www.lymedisease.org/
The Centers for Disease Control and Prevention website covers signs and symptoms of untreated Lyme disease along with their (often disputed) recommendations for diagnosis and testing, opinions on post-treatment Lyme Disease Syndrome, treatment and duration of such treatments, and more. https://www.cdc.gov/lyme/index.html