Misdiagnosing Multiple Sclerosis

misdiagnosing multiple sclerosis

Misdiagnosing multiple sclerosis is a significant problem, and one that many people can appreciate, including those with the disease or those who are living with the uncertainty of what they really have. In a series of upcoming articles, I will explore some of the challenges associated with getting an accurate diagnosis of the disease and differentiating it from others (“cousins”) with similar symptoms and signs.

Advertisement

For now, however, a research team at Oregon Health & Science University (OHSU) and the Portland Veterans Affairs Medical Center has named at least one reason multiple sclerosis is misdiagnosed: They claim clinicians rely too heavily on brain scans. In fact, the authors estimated that among the 122 multiple sclerosis specialists they questioned:

  • The clinicians saw about 600 patients in one year who had been given an incorrect diagnosis of multiple sclerosis by another physician before they saw the specialist
  • About 280 of the misdiagnosed individuals were taking a disease-modifying drug for multiple sclerosis, such as fingolimod (Gilenya), dimethyl fumarate (Tecfidera), and natalizumab (Tysabri), among others. Such drugs can cause significant adverse effects and cost upwards of more than $3,000 per month. So not only does a misdiagnosis result in the use of drugs that are inappropriate for the patient, it also wastes valuable time and money and has a negative impact on quality of life, physically and emotionally.
    • Some of the misdiagnosed patients had had the wrong diagnosis for years, which means they were exposed to medications and other treatments that could have been harmful.

    According to the study’s lead author, Dr. Andrew Solomon, formerly of OHSU but now at the University of Vermont College of Medicine, their findings indicate that clinicians rely too heavily on MRI findings when making a diagnosis, which then results in a misdiagnosis. Previous research also has suggested that the majority of individuals referred for possible multiple sclerosis actually because of an abnormal MRI actually had another neurological disorder.

    Disheartening finding
    Most of the responding specialists (66.4%) said that telling patients with a long-standing diagnosis of multiple sclerosis that they had been misdiagnosed was more challenging than telling individuals about a new diagnosis of MS. But here is the disheartening part.

    Nearly 14 percent of the responding specialists said they sometimes had elected not to tell patients whom they believed to have been misdiagnosed about their suspicions. Among the reasons given for nondisclosure were fear of psychological harm from revealing the misdiagnosis to the fact that the patients were not taking disease-modifying drugs and thus were not experiencing related side effects.

    Advertisement

    “Cousins” of multiple sclerosis
    What are the other possibilities that should be considered when clinicians are attempting a diagnosis that may lead to multiple sclerosis? The mnemonic VITAMINS is frequently used to categorize the different diseases or conditions that have signs and symptoms similar to those of MS: Vascular, Infectious, Traumatic, Autoimmune, Metabolic/Toxic, Idiopathic/Genetic, Neoplastic, and Psychiatric.

    A sample of the conditions doctors should consider include multiple lacunar infarcts, Lyme disease, syphilis, neuromyelitis optica, Behcet syndrome, vitamin B12 deficiency, Friedreich ataxia, traverse myelitis central nervous system lymphoma, and conversion disorder. The likelihood that your doctor will consider any of these or other diseases depends on your personal and family health history, current signs and symptoms, and the results of various tests.

    Clearly there are critical unresolved issues surrounding the diagnosis and misdiagnosis of multiple sclerosis. Rather than be a source of finger pointing, these challenges would serve patients better if clinicians could communicate more honestly and readily and if individuals could keep detailed notes and records of their symptoms to better assist in the diagnostic process until better tools are developed to identify or rule out multiple sclerosis.

    Also read about an eye test for diagnosing multiple sclerosis

    Reference
    Solomon AJ et al. Undiagnosing multiple sclerosis: the challenge of misdiagnosis in MS. Neurology2012 Jun 12; 78(24): 1986-91

Share this content.

If you liked this article and think it may help your friends, consider sharing or tweeting it to your followers.
Advertisement

Comments

they should rule out all the others before giving any diagnoses.
in the article it mentions all these other diseases (multiple lacunar infarcts, Lyme disease, syphilis, neuromyelitis optica, Behcet syndrome, vitamin B12 deficiency, Friedreich ataxia, traverse myelitis central nervous system lymphoma, and conversion disorder). I know that Lyme disease can show lesions on an MRI. But what about all the others mentioned? Do they have associative MRI lesions?This was an interesting article; Most of the time on some of my MS sites that I belong to, the big problem I see is not misdiagnosis that someone has MS when he/she doesn't but non-diagnosis when someone has MS but it takes years before the diagnosis is made. Some people go thru mulitiple tests over periods of years finally to learn they have MS. I thought that MRI lesions of a particular design were pretty conclusive. Perhaps not? There is also new information I read that lesions in the grey mater are neither seen nor looked for which are MS generated that could help with a diagnosis or misdiagnosis, perhaps?
Thanks for writing. Lesions are not always visible early in MS and if an individual has symptoms that fit a number of diagnoses, she or he can end up with a misdiagnosis or no diagnosis at all for quite some time. Regarding gray matter--I wrote a recent article on this topic entitled "New Brain Scan Uncovers Secret in Multiple Sclerosis." I also plan to write several more articles on the diseases that can mimic MS, so stay tuned to discover how they are similar to MS! Best to you
I was just told I do not have MS and have been living with the deppression of symptoms since 2006 Today I am happy I don't have MS but a flood of mixed feelings are now surrounding me besides mis trust in the doctors .Mainly now wondering what these drugs were doing to me and just what do I have?
Colleen: Thank you for writing. I'm sorry to hear you are having such a difficult time. You imply your doctors did not give you a diagnosis, and I can only assume they are treating your symptoms with a variety of drugs. Unfortunately, your plight is not uncommon; many people go from doctor to doctor for years while they are trying to get a diagnosis, with increasing frustration, only to end up still not knowing what they have. Some of these individuals share their experiences and ideas on various Facebook pages for MS...you may want to check them out. You may find some support there, including suggestions on how you may find a doctor who may help you. You never know! Good luck to you.
I was diagnosed at a MS CENTER with MS in 2005, now in January 2015 ive been told I dont and thats with a second opinion. Unbelievable. ..now im back to square 1 while I still suffer.
Very interesting article. I'll be looking forward to reading more about this. I have an MS diagnosis with no brain lesions and two "neopolasms" in my spinal cord. One was surgically removed from my cervical spine a few months ago. There were 3 obands in my csf. I am supposed to start copaxone injections this week and don't feel good about it. Thank you for your research and information. It helps those of us with diagnosis that are questionable.
I just returned from UNC Chapel Hill , a medical, research university that has a MS clinic. I went there because afterv10 yrsvof being diagnosed with MS , then last year a new neurologist tells me I DO NOT have MS. WELL, UNC says I do indedd ha.ve MS!. What a roller coaster. So, it is obviously becoming more difficult to diagnose. I believe UNC is right. You know when your body is screwed it.
I'm going through the exact same. Dx in 2005, neuro retired and neuros here say I don't have it. I'm disabled and have no answeres. Who did you go see. I'm thinking of going out of state.
Hughes syndrome causes similar symptoms, headaches,tiredness, heavy limbs... Had several scans with suspicion of a neuro disease. I climbed the Himalayas after taking blood thinners. Read Lyme is also often confused with MS.
Female 75" bitten by tick January 2015" MI plus 6 stents March 2015. August TIA like events - told CT "lesion" an Anomaly - no reported on discharge summary. RTA aged 8 MRI now shows unusual volume loss of frontal and parietal lobes. Have had disparate symptoms - in in week I October reduced (abd reduced again on week later) visual field right optin nerve damage. tinnitus sensorial hearin loaa left ear prior to this year now further ensorial loss both ears. Was SRN o disabled Unit in UK for the years (ironic). Appointment with Neurologist 3 March. Have excruciating pain left side of face and left hand - aching limba following ultimately dismissed diagnosis of TIA in August. problem - how do I not allow the Neurologist to fob me off with MS diagnosis. Any suggestions