Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of the endothelium and heart-brain connection. 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 auto-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

Wednesday, August 31, 2016

MS Mi$diagnosis

Most people assume that diagnosing multiple sclerosis is easy, but nothing could be further from the truth.  Diagnosing MS is a challenge, as there is no specific biomarker or blood test for the disease.  Other diagnoses, mostly caused by vascular issues like migraine or TIA, also show white matter lesions on MRI.  In fact, white matter lesions are up to 500 times more likely to be related to a vascular condition than MS! link  Even oligoclonal banding tests are non-specific for MS, as people with ischemic stroke have similar markers in CSF.   link

It's far too easy to misdiagnose MS;  a disease named for its symptom (many scars) and diagnosed by neurologists.  Neurologists have supposed eminence in MS diagnosis, which I believe has created a huge blind spot towards vascular evidence.  More on eminence vs. evidence based medicine
Maslow's theory also comes to mind:  "If all you have is a hammer,  everything looks like a nail."

Dr. Andrew J. Solomon, neurologist from the University of Vermont College of Medicine, has been publishing on this problem for many years.  He is lead investigator in a new study on MS misdiagnosis, presented at the recent AAN conference in Vancouver. link

Dr. Solomon's latest study was just published online in Neurology. Twenty four American MS specialists reviewed the cases of 110 patients who were misdiagnosed with MS, gave them correct diagnoses and then published their results.

The time for carrying a misdiagnosis was 3 to 9 years in 29% of patients and 10 to 20 years in 26% of patients.  31% of the patients experienced "unnecessary morbidity", which means they suffered for no reason.  How did that happen?  They were given drugs with dangerous side effects, which they did not need.

According to the study findings, 72% of the misdiagnosed patients (Edit: that's 79 people!) took medication to treat a disease they didn't have, some took these medications for many years. Four of the patients misdiagnosed with MS had participated in clinical trials for experimental MS therapies.

"This study suggests significant and long-term unnecessary risk for these patients," Solomon says.

Some of the treatments for MS carry serious side effects. One drug, taken by 13 percent of the misdiagnosed patients, can cause a potentially fatal brain infection, Solomon says. (Edit: 14 misdiagnosed patients were given Tysabri!) Other patients suffered from the discomfort and inconvenience of daily injections, others experienced side effects from medications, and finally, they lacked treatment for their actual correct diagnoses.

link

Other misdiagnosed patients were given mitoxantrone and cyclophosphamide.  This is absolutely unconscionable. I hope these patients find legal representation and are compensated for their pain, morbidity and suffering.  They deserve it!

Here's a recent news story, where two women took the neurologist who misdiagnosed them with MS to federal court.  These two women filed separate negligence law suits against Dr. Gary M. Weiss, a former Vail Colorado based neurologist, who misdiagnosed them with MS using his own MRI lab, and them put them on MS drugs.   One woman was wrongly given over 100 infusions of Tysabri.   Over 20 of Dr. Weiss' MS patients now claim they were misdiagnosed.  link to news story Shockingly,  Dr. Weiss is still treating patients, as a practicing neurologist in Florida.

The problem highlighted in this lawsuit is that many neurologists see dollar signs when they diagnose M$.  An MS diagnosis means ongoing care, high fees for infusion centers or MRI centers, lots of prescriptions, and a patient for life.  Many neurologists receive kickbacks from pharmaceutical companies, in the form of honorariums, speaking fees and fees for enrolling patients in clinical trials.

Maran Wolfston, an MS patient and doctoral student, investigated her neurologist when she felt he was pushing her use specific MS drugs.  She later published her revelations.  Her neurologist first encouraged her to enroll in a clinical trial, and after she declined he told her she would need to begin Tysabri infusions.   Sure enough,  using the Dollars for Docs site sponsored by Propublica and thanks to the Affordable Care Act, she could search her neurologist's payments from pharmaceutical companies.  (You can, too! Link to Dollars for Docs )  She discovered her neurologist was receiving major payments from Biogen--the sponsor of the clinical trial he had recommended and maker of Tysabri.  She has published a paper on the result of her "loss of trust."
I knew that I had felt pressured to take medications by my neurologist. When I found that he had been paid large sums of money—six times my yearly salary—to work for the manufacturers of those same drugs, my loss of faith was complete. I never returned to his neurology clinic again.   link to paper
There is no similar monetary incentive for the diagnosis of vascular disease.  Neurologists only consider their particular "hammer" of immune modulating drugs and then they assert their eminence. And patients are too intimidated, sick and overwhelmed to ask questions.

Here's more from the lead neurologist, who also published in 2012 Link to "Undiagnosing" MS.  Dr. Solomon half-heartedly tries to rationalize the hair-trigger response in prescribing drugs:

In patients diagnosed with MS, prompt initiation of treatment with immune modulating therapies is often appropriate, so, notes Solomon, "There is pressure to make the diagnosis of MS early, and to start patients on MS therapies quickly. But in some patients who do not meet rigorous standards for diagnosis, waiting longer and close follow-up may determine the correct diagnosis."

Making sure the diagnosis is correct and waiting seems like the best idea.  Many studies now show that starting patients early on MS drugs might decrease relapses, but makes no difference in long term disability or MRI results, so why not wait to prescribe Tysabri or mitoxantrone??

Better still, why not first address the more common cardiovascular causes of white matter lesions, and truly make MS a diagnosis of exclusion?

White matter lesions on MRI, a supposed "hallmark" of MS, appear most often in vascular conditions.  These conditions include antiphospholipid syndrome (Hughes Syndrome), migraine, stroke, and transient ischemic attacks.  Any of these vascular conditions---which all involve a disturbance of cerebral circulation and hypoperfusion--can exhibit white matter lesions on MRI.  

White matter lesions on MRI are up to 500 times more likely to be related to vascular disease than MS.   link  The idea of MS lesions being related to the vasculature and slowed cerebral blood flow is not new. link  People with MS have cerebral circulation 2X slower than healthy controls.  link

If you know someone who has recently been diagnosed with MS and questions their diagnosis, or if you have questions regarding your own diagnosis---please--go through the list of differential diagnoses with your doctor or get a second opinion, especially before taking any disease modifying drug.  link

And if you have any vascular issues, like hypercoagulation, blood clots, migraine, high blood pressure, obesity, TIAs, stroke, high inflammation (C reactive protein) or venous disease---please, talk to your doctor about addressing these issues.  If there are vascular commorbities, there is a chance that in addressing vascular problems you may never require disease modifying medication.

Be a patient like Maran Wolfston---be knowledgable, ask questions, do your research.
Be that patient (or caregiver) almost every neurologist dreads.
Make them roll their eyes.
Trust me, the momentary embarrassment is worth it.

be well,

Joan








15 comments:

  1. so SOOOO interesting, thank you Joan!!! 2nd, even 3rd opinions are always worth it. What shocking percentages!! Makes you wonder about other illnesses getting misdiagnosed as well. I was one of them and took 15 yrs and bazillion tests and doctors later they got it right! I love your final line!

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    1. you're more than welcome, rrranda! Misdiagnosis is a leading cause of death for patients. And misdiagnosis of MS patients chaps my hide---as my own husband presented with vascular issues, and his neurologist (while rolling her eyes at me) told me there was no relationship to his MS. Nine years later, he's still working full time, jogging and living a healthy life, because we dealt with his vascular condition.

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  2. Thank you Joan for your ongoing and relentless advocacy. Your site is my nr. 1, and provides always a great moral support! Job

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    1. thanks for that, JR. Sometimes I feel like the crazy woman on the corner, mumbling to herself..so your affirmation is moral support for me :-) Stay well, keep moving, stay strong.

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  3. Thank you from me here in UK for working so hard for us all with MS speaking up with the truths.

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    1. You bet, Lynne! You stay strong. xox

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  4. Another Thank You Joan. Your hard work definitely is noticed by many and much appreciated.
    You have made me more knowledgeable on so many things like ... MS and CCSVI. No neuro can dispute your writings!!
    You have been part of my life since November 23, 2009 ... I feel blessed.
    Love to you. xoxo

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    1. I'm blessed to know you, Shirley--and have your encouragement! Take care of yourself. xoxo

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  5. Hi Joan! I just stumbled across your blog and loved your knowledge and (sassy) style. Thank you for all of your hard work... I am commenting on this older post because, even though I was diagnosed 5 years ago, I have a fantasy that there is more to my diagnosis... I *did* have the O-bands (12 of them) in my CSF but I also have had concussions - the last one happened in a pretty bad car accident (the airbag broke my arm and I was never treated for the concussion) and my MS symptoms came about 9 months after that accident - my neurologist never asked me about that so I guess I assumed it didn't matter? Anyway, I would love to hear what you have to say about this! Again, thank you so much! -Fran

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    1. Also, I don't know if I'll be notified using this profile... my email address is franshea@zeichenpress.com

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    2. Hi Fran--thanks for the comments! Nice to meet you. I don't do e-mail for this blog, and have been traveling--which is why I just saw your comment.

      Your concussions are most certainly related!!! Any time the blood brain barrier is broken and plasmic particles get into brain tissue (like in a stroke, brain injury, or in MS) there can be an infiltration of immune cells and breakdown of myelin, which is what those bands are showing. These are called cerebral microbleeds.

      http://journals.sagepub.com/doi/full/10.1177/2059700216684518

      http://ccsviinms.blogspot.com/2015/10/a-single-drop-of-blood.html

      Most people don't know this---but stroke patients have the same bands you do! They just aren't usually tested for it.

      https://www.medpagetoday.com/cardiology/strokes/31410

      But do we give stroke patients strong immune ablating drugs or call it an "autoimmune disease?" Nope. You are correct in understanding how your brain injuries have most likely started your MS--because that is how blood got into your brain tissue. Share this research with your doctor, whoever you want. Most importantly---HEAL your blood brain barrier. Modalities that work for concussion: sleep, hyperbaric oxygen, lots of colorful fruits and veggies with plenty of antioxidants, omega 3 oils, avoid gluten, reduce stress, meditate. Don't take any serious immune ablating drugs without understanding your MS diagnosis. Hope this info helps you! Joan

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  6. Amazing!! I *knew* you'd know!!
    I stopped taking the toxic Disease Modifying Drugs last November after being on the Wahls Protocol for almost a year. AND I'm working on the sleep portion... Stress is moocho better these days... I just started having my atlas adjusted a couple days ago - and after the adjustment (with that atlas orthogonal instrument) I wasn't dizzy for the first time in over five years! (that effect only lasted for 1.5 days - I go back again today...)
    I'm gonna look into that hyperbaric oxygen, AND will share this info with everyone who isn't sick of me talking about this. ;)
    THANK YOU.

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    1. Ahh... the hyperbaric oxygen chamber doesn't look like it will work for me because I had a repaired spontaneous pneumothorax 3 years ago (I know, bizarre.)...

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  7. My neurologist told me he wasn't convinced after treating me for 13 years for MS that I had MS. But this wasn't until I told him I was through taking all the meds he had prescribed for me to treat my MS. i have had several bad drug reactions and ended up having heart arrhythmias after being given IV solumedrol for the few flares that I have had that ended me in the hospital.When I asked him why he thought I might not have MS he said that my MRIs had remained unchanged and my lesions were not in the area of the brain where MS lesions typically are located. Central brain and spinal cord. My frustration is that he has viewed my MRIs for 13 years and why is he just now questioning his diagnosis. I was a practicing registered nurse when I was diagnosed and I stopped practicing because I was told the stress would only make my symptoms worse. My main symptom has always been fatigue.

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    1. Oh, Debbie. I'm so sorry. It sounds like your neuro has been reading up on MS misdiagnosis, and is only just now questioning your diagnosis. It might be a good idea to get a second and third opinion from other MS specialists. Make sure to take care of yourself as best you can by eating whole foods with plenty of colorful fruits and vegetables, move everyday, reduce stress (but that does not mean don't work!) get good sleep, sunshine and get on with living. B12 deficiencies, cervical disc disorders, antiphospholipid syndrome (Hughes Syndrome) and vascular issues can all cause white matter lesions in brain and spine. Your answers are out there---I hope you find them soon!

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