Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Sunday, September 9, 2012

Undiagnosing MS

September 9, 2012 at 8:53am

It's important to work with your doctor and go 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 I began writing about MS research, I'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. 

Please note, I do not question my husband's MS diagnosis.  I question the characterization of his disease process as autoimmune.  According to the McDonald criteria, he has MS.  He has lesions disseminated in time and space, and had banding in his CSF.


But what is MS?  Isn't is simply a diagnosis made by looking at symptoms, not aetiology?
Was Jeff's disease diagnosis related to his venous malformations and slowed collateral blood flow?

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.  It is entitled, 
“Undiagnosing” multiple sclerosis: The challenge of misdiagnosis in MS

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 spondylosis 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.

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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.  Jeff had many lesions, newly enhancing and old, as shown on MRI and he also had a lumbar puncture which showed banding before his diagnosis was made.  

Here is the newly revised McDonald criteria for MS diagnosis.  It includes banding in the CSF and dissemination of lesions in time and space.
We're all our own very best advocates, and knowledge is power.  If you have any doubts, please speak with your doctors. 
Be well,
Joan

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