The contemporary spectrum of multiple sclerosis misdiagnosis (Chapt 12)

[ActiveMSers]

September 27, 2016; 87 (13)
The contemporary spectrum of multiple sclerosis misdiagnosis
A multicenter study

Andrew J. Solomon, Dennis N. Bourdette, Anne H. Cross, Angela Applebee, Philip M. Skidd, Diantha B. Howard, Rebecca I. Spain, Michelle H. Cameron, Edward Kim, Michele K. Mass, Vijayshree Yadav, Ruth H. Whitham, Erin E. Longbrake, Robert T. Naismith, Gregory F. Wu, Becky J. Parks, Dean M. Wingerchuk, Brian L. Rabin, Michel Toledano, W. Oliver Tobin, Orhun H. Kantarci, Jonathan L. Carter, B. Mark Keegan, Brian G. Weinshenker

First published August 31, 2016, DOI: https://doi.org/10.1212/WNL.0000000000003152

Abstract

Objective: To characterize patients misdiagnosed with multiple sclerosis (MS).

Methods: Neurologists at 4 academic MS centers submitted data on patients determined to have been misdiagnosed with MS.

Results: Of 110 misdiagnosed patients, 51 (46%) were classified as “definite” and 59 (54%) “probable” misdiagnoses according to study definitions. Alternate diagnoses included migraine alone or in combination with other diagnoses 24 (22%), fibromyalgia 16 (15%), nonspecific or nonlocalizing neurologic symptoms with abnormal MRI 13 (12%), conversion or psychogenic disorders 12 (11%), and neuromyelitis optica spectrum disorder 7 (6%). Duration of misdiagnosis was 10 years or longer in 36 (33%) and an earlier opportunity to make a correct diagnosis was identified for 79 patients (72%). Seventy-seven (70%) received disease-modifying therapy and 34 (31%) experienced unnecessary morbidity because of misdiagnosis. Four (4%) participated in a research study of an MS therapy. Leading factors contributing to misdiagnosis were consideration of symptoms atypical for demyelinating disease, lack of corroborative objective evidence of a CNS lesion as satisfying criteria for MS attacks, and overreliance on MRI abnormalities in patients with nonspecific neurologic symptoms.

Conclusions: Misdiagnosis of MS leads to unnecessary and potentially harmful risks to patients. Misinterpretation and misapplication of MS clinical and radiographic diagnostic criteria are important contemporary contributors to misdiagnosis.

[AnotherDave]

Hey, Dave. I just read your latest post and can't wait for the next one!
The diagnoses I have been given over the years sound a little like what you describe above. An Infectious Disease Specialist said that the current diagnoses made by several other doctors answer the reality of my situation quite well and I should just accept them and continuing treating the symptoms. Wow. Not going back to her again. But she is not alone. Fibromyalgia is my main problem along with sleep disorders, chronic fatigue syndrome, degenerative joint disease (3 joints replaced thus far), osteoarthritis, Major depressive disorder with anxiety, brain fog, GERD, IBS, Restless Leg Syndrome, heart murmur, high blood pressure and cholesterol, and even low testosterone levels. And how many of those can actually be proven by scientific testing? It is a vicious cycle of medical opinions made with the best of intentions but still made without concrete evidence. Just keep the pills coming and you will feel better in just a little while longer. What a "little while" means is pure unadulterated speculation, while scientific evidence is also an unadulterated source. Just a whole lot more time lost to all the wonderful things that keep us hoping that someone will somehow make the connection with lyme and start treating us with the right stuff. It's one big "Charlie Foxtrot" where nobody wins but we keep suffering.
Can't wait to see the whole book when you're done! I'm very glad that you are such a good, down to earth writer, keeping the blessings and curses always in view!

[AnotherDave]

I certainly hope that all those suffering in this way find the truth. Trying to convince doctors that more tests are needed is a huge challenge. This is especially true when they are under the "thumbs" of the CDC, their employers in the health and wealth industry, and the insurance companies that tear apart every claim they receive and every Rx they review. Antibiotic surveillance is joining the monitoring of Opioid Rx's in the purview of the hands of "authoritarian conformist" doctrines. I have heard the fear from doctors that writing Rx's for prolonged antibiotic treatment and maintenance opioid pain management could result in the loss of their medical license if they come under investigation. We can only hope that those who perform such "witch hunts" will personally experience the same mental, emotional, and physical extremes of real distress that we have suffered under their "regime" of inquisition.
Here's hoping and praying for your continued physical and mental improvement in this new fight you have been given! Our love goes out to you Dave!