And, in an especially surprising finding, about one in seven of the MS specialists said they had sometimes chosen not to inform a patient of their suspected misdiagnosis, citing among their reasons the fact that the patients were not receiving MS treatment, or the potential psychological harm in changing a diagnosis.
Dennis Bourdette, M.D., the senior author of the study and director of the OHSU Multiple Sclerosis Center, said the misdiagnoses not only meant patients were getting expensive and potentially harmful treatments they didn't need, but they were also not getting the appropriate treatment for the diseases they may have had.
We’ve been discussing the importance of going through all of the differential diagnoses before accepting an MS diagnosis as final--especially before beginning a disease modifying treatment. For a list of 100 other diseases and medical situations which can be mistaken for MS, please see this publication:
It is apparent that diagnosing MS is not an exact science, but more akin to a process of elimination.
In the three years since Marie and I began this page, we’ve heard from readers originally diagnosed with MS, who were later told it was actually Celiac disease, low vitamin B12 levels, migraine, Lyme disease, ischemic disease, Hughes Syndrome, TIAs, co-infection with Cpn and other illnesses. And many, many of you, like Marie and my husband, have CCSVI from traumatic injury, venous malformations and misalignment. My question remains....shouldn’t venous disease, or CCSVI, be investigated as a differential for MS? It is scientifically proven that cerebral blood flow issues can manifest as white matter lesions in the brain.
Here’s more on “undiagnosing MS” from a paper published in Neurology journal last year, authored by three neurologists. I purchased the paper to learn more, so I could share this information with you.
http://www.neurology.org/content/early/ ... 2.abstract
Three academic neurologists sent out a questionnaire to other academic neurologists in the US---they utilized names and e-mails from the Consortium of MS Centers registry and via google.
242 individual neurologists and 122 survey were completed--which resulted in a response rate of 50.4%
These neurologists were asked:
“Have you ever evaluated a patient who carried a diagnosis of MS (given by another provider) for longer than a year who, after your neurologic exam and review of lab data, you strongly felt did NOT in fact have MS?”
Nearly all respondents (95.1%) had evaluated such a patient in the past.
Over one-third (34.4%) reported seeing 6 or more misdiagnosed patients in the last year, including 20 (17.2%) respondents who had seen 10 or more such patients.
To estimate the number of patients who had been seen with a misdiagnosis of MS, they used the median from the range of each individual response to this question and assigned the value of 10 for a response of “10 or more,” to estimate the total number of patients. Using this method, the respondents had seen an estimated 598 patients misdiagnosed with MS within the last year---but this estimate is made on the lower side, since 10 or more could be many more than 10.
One very disturbing fact from this survey were the number of patients whose neurologists felt were misdiagnosed, yet who were on disease modifying treatments. Within a period of one year all respondents had seen an estimated 279 patients misdiagnosed with MS who were on a DMT.
When asked what these neurologists believed to be the correct diagnosis for these patients, most chose “nonspecific white matter abnormalities, small vessel ischemic disease, and migraine." These changes on MRI are all due to vascular issues. In each instance, blood flow changes, low oxygen and hypoperfusion lead to white matter lesions. These changes are not due to an autoimmune process, and being on an immune modulating drug could be harmful to these patients. Also, there could be underlying issues, like high blood pressure, venous or arterial disease that are not being addressed. This misdiagnosis is not benign.
Other responses to what the neurologists believed might be the correct diagnosis were Neuromyelitis Optica (NMO) psychiatric disease, fibromyalgia, cervical spondylyosis with myelopathy (cervical neck damage due to misadjustment or injury) and celiac disease. Each of these diseases has a specific treatment protocol, and none of them is MS drugs.
Please make sure you and your diagnosing neurologist have throroughly reviewed your blood and cerebrospinal fluid results, as well as your MRI. I've often mentioned how we had Jeff independently tested for APS (Hughes Syndrome) and Lyme disease. He also had a lumbar puncture which showed banding before his diagnosis was made. Here is the newly revised McDonald criteria for MS diagnosis.
http://journals.lww.com/neurotodayonlin ... r,.10.aspx
We're all our own very best advocates, and knowledge is power. If you have any doubts, please speak with your doctors.
blossom wrote:could be frodo, keeping in mind that the autoimmune theory is, after all, a theory -- that took off pretty much dusting other possibilities---this has shown it's colors big time with ccsvi for instance.
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