Many Misdiagnosed With MS

 

Neurologist Discusses Diseases Which May Mimic MS

Video taken from the channel: Andrew Reeves Neurology


 

Andrew Solomon on the Misdiagnosis of Multiple Sclerosis

Video taken from the channel: Society to Improve Diagnosis in Medicine


 

Misdiagnosed: My MS Symptoms Were Dismissed as ‘Stress’ | Health

Video taken from the channel: Health Magazine


 

Almost 18 percent of patients diagnosed with multiple sclerosis don’t have it

Video taken from the channel: WSOCTV9


 

Saskatchewan woman learns she was misdiagnosed with MS 23 years ago

Video taken from the channel: CTV News


 

Daniel Ontaneda, MD, PhD: How Multiple Sclerosis Can Be Misdiagnosed

Video taken from the channel: Neurology Live


 

Daniel Ontaneda, MD: The Problem of Misdiagnosis in Multiple Sclerosis

Video taken from the channel: Neurology Live


The most common correct diagnosis among the patients misdiagnosed with MS was migraine (16%), followed by radiologically isolated syndrome, a condition in which patients do not experience symptoms. Many Misdiagnosed With MS. THURSDAY, April 11, 2019 Almost one in five multiple sclerosis patients may be misdiagnosed with the autoimmune disease, according to a new study.

Of 241 previously diagnosed multiple sclerosis (MS) patients referred to two major Los Angeles medical centers for treatment, nearly 18% did not actually have the autoimmune disease, the. The most common correct diagnosis among the patients misdiagnosed with MS was migraine (16%), followed by radiologically isolated syndrome, a condition in which patients do not experience symptoms of MS even though their imaging tests look similar to those of MS patients. The misdiagnosis of multiple sclerosis (MS) is a problem with significant consequences for patients as well as the healthcare system.

There are nearly 1 million people in the United States living. The researchers found that of the people misdiagnosed with MS, many received MS treatment for 4 years before receiving the right diagnosis. The most common correct diagnosis among the patients misdiagnosed with MS was migraine (16%), followed by radiologically isolated syndrome, a condition in which patients do not experience symptoms of MS even though their imaging tests look similar to those of MS patients. Nearly 18% of new multiple sclerosis (MS) patients referred to two speciality clinics in Los Angeles, California, had been misdiagnosed with the disease, according to a recent study.

A previous survey of MS specialists found that more than 95% had seen at least one patient in the past year that was misdiagnosed with MS by another provider. Some treatments for MS carry serious side effects. One drug, taken by 13 percent of the misdiagnosed patients in the current study, can cause a potentially fatal brain infection. Experience: I was misdiagnosed with MS Many people felt I should have been relieved or even ecstatic at this news. But all I could think about were all those years lost to a disease I didn’t have.

THURSDAY, April 11, 2019 (HealthDay News) Almost one in five multiple sclerosis patients may be misdiagnosed with the autoimmune disease, according to a new study. Of 241 previously diagnosed multiple sclerosis (MS) patients referred to two major Los Angeles medical centers for treatment, nearly 18% did not actually have the autoimmune disease, the researchers found.

List of related literature:

The patient had been diagnosed with MS over 12 years ago, and had had paralysis six times.

“Treating Autoimmune Disease with Chinese Medicine E-Book” by Wanzhu Hou
from Treating Autoimmune Disease with Chinese Medicine E-Book
by Wanzhu Hou
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Patients with a single episode of inflammation cannot be said to have MS, but are instead said that have clinically isolated syndrome.

“Cognitive Errors and Diagnostic Mistakes: A Case-Based Guide to Critical Thinking in Medicine” by Jonathan Howard
from Cognitive Errors and Diagnostic Mistakes: A Case-Based Guide to Critical Thinking in Medicine
by Jonathan Howard
Springer International Publishing, 2018

Patients with a definite MS diagnosis often have a variety of other autoimmune illnesses such as systemic lupus erythematosus, rheumatoid arthritis, polymyositis, and myasthenia gravis.

“Exercise Physiology: Nutrition, Energy, and Human Performance” by William D. McArdle, Frank I. Katch, Victor L. Katch
from Exercise Physiology: Nutrition, Energy, and Human Performance
by William D. McArdle, Frank I. Katch, Victor L. Katch
Lippincott Williams & Wilkins, 2010

The patient needs to provide a detailed history to assist in an accurate diagnosis of MS.

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from Nursing Care Plans E-Book: Nursing Diagnosis and Intervention
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• MS often mimics other neurologic diseases, which makes the diagnosis difficult and prolonged.

“Clinical Companion for Medical-Surgical Nursing E-Book: Patient-Centered Collaborative Care” by Donna D. Ignatavicius, Chris Winkelman, M. Linda Workman
from Clinical Companion for Medical-Surgical Nursing E-Book: Patient-Centered Collaborative Care
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Elsevier Health Sciences, 2015

Often misdiagnosed as MS.

“Pocket Neurology” by M. Brandon Westover
from Pocket Neurology
by M. Brandon Westover
Wolters Kluwer Health, 2016

MS can also present more acutely in severity, progression, and vari­ety of symptoms.

“Family Practice Guidelines, Third Edition” by Jill C. Cash, Cheryl A. Glass
from Family Practice Guidelines, Third Edition
by Jill C. Cash, Cheryl A. Glass
Springer Publishing Company, 2014

Many times the challenge is to rule out other conditions, resulting in a diagnosis of MS.

“Medical Conditions in the Athlete 3rd Edition” by Walsh Flanagan, Katie, Cuppett, Micki
from Medical Conditions in the Athlete 3rd Edition
by Walsh Flanagan, Katie, Cuppett, Micki
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Because of the unpredictable nature of the course of the disease and the extensive variety of symptomatology associated with MS, diagnosis is invariably difficult and patients are often misdiagnosed in the initial stages of the disease.

“Dysarthria: A Physiological Approach to Assessment and Treatment” by B. E. Murdoch
from Dysarthria: A Physiological Approach to Assessment and Treatment
by B. E. Murdoch
Stanley Thornes (Publishers), 1998

To be diagnosed with MS, the individual usually has to have experienced at least two such episodes and have evidence of two or more distinct areas of demyelination.

“Fractured Minds: A Case-Study Approach to Clinical Neuropsychology” by Jenni A. Ogden
from Fractured Minds: A Case-Study Approach to Clinical Neuropsychology
by Jenni A. Ogden
Oxford University Press, USA, 2005

Oktay Kutluk

Kutluk Oktay, MD, FACOG is one of the world's foremost experts in fertility preservation as well as ovarian stimulation and in vitro fertilization for infertility treatments. He developed and performed the world's first ovarian transplantation procedures as well as pioneered new ovarian stimulation protocols for embryo and oocyte freezing for breast and endometrial cancer patients.

Mail: [email protected]
Telephone: +1 (877) 492-3666

Biography: https://medicine.yale.edu/profile/kutluk_oktay/
Bibliography: oktay_bibliography

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26 comments

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  • All of my MRI say I have a demyelinating disease that correlates with MS and I’ve had some flyers show up and then I have other doctors that say it’s incorrect who do you see when they all have different opinions? This is been a quality of life change for me for a long time I’ve had to use a cane I’ve had to use a walker a neuropsych doctor believes that I have relapsing-remitting MS and as you know that’s a battery of tests done over extensive hours.

  • I initially thought I had MS, because my mother has been diagnosed and my symptoms mimicked hers. But unlike her, it has not shown up through any MRIs and the lumbar puncture. I really wish I knew what it was though since this is debilitating.

  • I’m 26 and had an MRI last year when I experienced sudden sensorineural hearing loss. My hearing came back after a steroid injection, but there were small non specific white matter lesions found on my brain. The ENT said given my age it could be MS. Could white matter lesions occur for no reason at all?

  • I have all the symptoms of ms including white spots on the brain macular degeneration and sle. My legs look like twigs I am pale and my pancreas has a tumour on the lower portion and the rest has atrophied, doctors don’t really treat anything any more. I have a lot of specialist Nd if not for my go I’d be left without any treatment for rain or sle. Thank you btw it’s taken at least ten yrs for all my symptoms

  • This is the misogyny of modern medicine. All problems presented by women are first brushed off as “all in your head.” My mom fought doctors for a year that her abdominal symptoms meant something was wrong. She was told she had IBS, depression, and anxiety. What she actually had was ovarian cancer. And doctors treating her like a hysteric for a year led it to be advanced at the time of diagnosis. I think all the time of how much better her prognosis would have been if people would have listened to her.

  • Hi Andrew..I’ve been having symptoms for nearly 9 years now..after the birth of my daughter I started getting burning down my legs..all over pins and needles numbness and my knee would just give out so I fell a few times..i had a feeling of tightness under my breasts…i was referred to a neurologist for mri and tests..the only thing I had was a white spot on the mri and test were fine the so they didn’t know what it was…anyway my symptoms went apart from odd tingling and numbness headaches burning down legs..but nothing like the first attack…im here 9 years later and ive been having muscle problems with pain in my legs..it feels like my first attack all over again..i remember a few weeks back laying in beg and my whole body feeling numb but not painful I have excruciating stabbing pains in arms and legs..my arm went totally numb for 3 days…numb toes..my tonuge is also numb..when I lay down it feels like something is on my chest….the doctor said a month ago it sounds like fibromyalgia…could you please tell me what you think

  • Can stress bring on MS like symptoms? Every time my stress level gets to an unpleasent level, I get odd symptoms. I woke up one morning and my leg was paralized. This went away after about a week. Now, I’m getting jerky and I’m vibrating and forgetting stuff alot.

  • Wouldn’t my lumbar puncture have checked all those things? My Dr said that the lumbar puncture was to check for MS and it’s mimickes. The results were negative for everything except “banding” which my Dr. Said is equivical. I am stuck with no diagnosis. Neurologist wants me to have another MRI but this time with contrast. I don’t understand why. The Regular MRI showed lesions. I have read about people getting very sick after contrast so it doesn’t seem worth the risk to me.

  • I have Autoimmune Encephalitis, Undifferentiated Connective Tissue Disorder, & AntiPhospolipid Syndrome. My docs thought I might have had MS when I came in for diagnosis at age 14… This makes sense now. I have never heard of a 14 year old with MS. A lot of my neurologic symptoms are so similar to MS. Thank God I do not have it. And I thank my doctors at Duke hospital in Durham NC for being amazing medical professionals.

  • Hi Dr. Reeves if you have lesions that show up on a MRI and strands that show up on a lunbar puncture test does that mean you have MS?

  • does mononucleosis have any connection to MS…i feel like i never got over mono like it still inside me since i was like 15 years old when i had it and now almost 60years old feels like i still have mono.. i don’t go to M.D. doctors any more all they want to do is here’s a damn pill and come back in a few weeks more money and pills… i refuse EIVL BIG PHARMACEUTICAL HAVE NOT BE TO A DOCTOR IN YEARS…STILL FEEL THE SAME BUT NOT TAKING EVIL BIG PHARMACEUTICAL BUT I STILL HAVE THE FEW DOLLARS THAT I REFUSE TO GIVE TO BIG PHARMACEUTICAL AND MD DOCTORS!

  • A lot of people in my HNPP support group were misdiagnosed with MS before getting genetic testing. I’d love to hear you give a talk on HNPP if you are versed in it. It can be a very severe disease, and most doctors just brush us patients off and minimize our neuropathy pain.

  • My doctors are still tryna rule out everything else, no lupus…etc. my grandma does have lupus. my worse symptoms are pressure and ringing in ears, eye pain, confusion and trouble walking. i also have asthma and i’m a survivor of horrible abuse and head trauma. my mri’s are not bad looking enough to be the cause of my symptoms. even the bulging neck discs ( 5 ), aren’t very bad. also random stabbing pain anywhere on body, and heat intolerance. my ears and eyes need help real bad.

  • What about lyme disease attacking the nervous system?

    Edit: Oh, haha, shoulda kept listening before I commented. He just mentioned it.

  • I will be seeing a neurologist in a few months for ms like symptoms, but I can’t have an mri due to having metal in my body. I’m just curious if legions can show up on a ct scan? If not, what other tests can they do to find out what is wrong with me? I’ve been dealing with this for years, and it’s so frustrating. Thanks.

  • Here goes,

    Posting this here because I know some of you do research and think I may have stumbled upon a very important insight concerning the etiologies of various neurodegenerative disorders and maybe degenerative disorders in general.

    I’ll cut to the chase and ask the question and then explain how I got to the hypothesis. It is: Is it possible that distinct neurodegenerative and musculoskeletal degenerative disorders are in fact be specific symptom complexes that correspond to dysfunction of specific substructures of the cervical ganglia which subsequently alter certain functionalities of the choroid plexus and have downstream effects on the basal ganglia and spine?

    A recent medical situation in my life prompted me to conduct some personal research to better understand my condition. As a result, I became familiarized with the dynamics of a specific system of structures in the body that, if better understood and regarded as a unified whole, could potentially shed a brighter light in the etiologies of degenerative disorders.

    Essentially, my research led to make connections between three structures in the neck and head: the cervical ganglia, the choroid plexus, and the basal ganglia.

    A few observations became key in developing this idea about cervical ganglia involvement in degenerative disease. The first had to do with the basal ganglia. Basal ganglia dysfunction can cause a dearth of dopamine in the brain and subsequent cluster headaches and Parkinsonism/movement disorder symptomatology. This structure controls voluntary movement in the body and so in the case of movement disorders, it is usually the culprit. The question then becomes what is the fundamental cause of this dysfunction?

    https://jamanetwork.com/journals/jamaneurology/fullarticle/784785

    Thinking about a specific syndrome called Eagle’s Syndrome which often presents with symptomatology similar if not identical to that of neurodegenerative/movement disorder. Eagle’s Syndrome is an abnormal ossification and elongation of the styloid process at the base of the skull that interferes with the cervical ganglia and carotid arteries in the neck and creates symptoms.

    https://actascientific.com/ASDS/pdf/ASDS-02-0202.pdf

    I wondered if superior cervical ganglia dysfunction could have downstream effects on the basal ganglia and cause disorder. So I began to attempt to understand the dynamic relationship between the cervical and basal ganglia.

    I began to look more closely at the cervical ganglia, in particular the superior cervical ganglia. This structure innervates the eye, parts of the face, the throat and sinuses, stimulates mucous production, has a part in regulating heartbeat (an aside: the disruption of the cervical ganglia when an Eagle’s Syndrome sufferer turns their head can result in panic symptoms: palpitations, dry mouth, gagging, so this could be a tool when thinking about mental heath physiopathologies as well), and also found that it is the only peripheral structure that sympathetically innervates areas of the head and brain. In particular, it innervates a structure in the brain called the choroid plexus. This was the next bridge on my way to the basal ganglia.

    https://en.wikipedia.org/wiki/Superior_cervical_ganglion

    The choroid plexus and found that it has a few very important functions: 1. To release transferrin that promotes iron homeostasis in the brain 2. Send agents to bind with antibodies to be flushed out of the system when infections are resolved and 3. Stimulate production of cerebrospinal fluid. That all struck me as fairly promising.

    https://en.wikipedia.org/wiki/Choroid_plexus

    I started with antibodies and found articles about post-infection movement disorders (specifically PANDAS, about which there is now literature about non-pediatric cases) where it is shown that sufferers have anti basal ganglia antibodies.

    https://www.ncbi.nlm.nih.gov/books/NBK333433/

    It struck me that if a substructure of the cervical ganglia that innervates parts of the choroid plexus that promote production of antibody binding agents is dysfunctional, an infection could very well trigger an indefinite autoimmune response, attacking the basal ganglia and other systems. Some neurodegenerative and degenerative disorders like MS are thought to be autoimmune, and disruption of the cervical ganglia and subsequent introduction of infection could precipitate an indefinite autoimmune response. Symptom progression might depend on the nature of the ganglia dysfunction (if it is ongoing, say, due to injury and resulting occlusion, or intermittent, say, due to Eagle’s Syndrome, in which turning the head causes ganglia disruption), theoretically accounting for the different subtypes of MS.

    https://www.nationalmssociety.org/What-is-MS/Definition-of-MS/Immune-mediated-disease

    I also had the thought that if iron deregulation in the brain could be caused by dysfunction of a specific substructure of the cervical ganglia and subsequently the choroid plexus, maybe iron irregularities in the basal ganglia would be observed in sufferers of movement disorders, and sure enough, it’s observed in most, if not all of them. At this point I felt like I was really onto something.

    https://www.ncbi.nlm.nih.gov/m/pubmed/22266337/

    And then a thought occurred to me: what if the first domino to fall in the etiologic chain of ALL of these degenerative disorders begins in the cervical ganglia? This could be why there are peripheral nervous system symptoms that manifest early in diseases like MS (the cervical ganglia innervates the eye and throat and heart, so vision dysfunction, dysphasia, heart rhythm problems etc would be some of the first symptoms you’d expect to see in this etiologic formulation). I’d seen papers talk about a corticothalamic basal ganglia circuit, but not much of anything about the cervical ganglia or choroid plexus, and I thought, “maybe the cervical ganglia is part of that circuit, affecting it indirectly but very profoundly.”

    Not everyone who suffers from degenerative diseases would have Eagle’s Syndrome of course, but maybe there would be occlusion/tortuosity of the ECA or cervical ganglia, or maybe a trauma shifted their positions leaving the cervical ganglia susceptible to injury, or maybe genetic degenerative disorders’ gene expressions simply omit instructions for certain substructures of the cervical ganglia to form and subsequently instruct the choroid plexus.

    So the idea is, if there are three main tasks of the choroid plexus, then there are seven combinations of those tasks (1; 2; 3; 1+2; 2+3; 1+3; and 1+2+3), and there are two ways for each of those tasks to dysfunction (over-firing or under-firing, although I’m not exactly sure about this detail), then each combination of simultaneous or sole dysfunction of cervical ganglia substructures which correspond to areas of the choroid plexus that are involved with completion of one of these three tasks would represent a distinct symptomatology—i.e., a distinct degenerative disorder.

    Important to note is that for antibody binding dysfunction due to lack of transferrin to become part of a neurodegenerative symptom complex, it may require an initial infection of a certain type to kick-start an autoimmune response strong enough to manifest in this way. In my reading about PANDAS I came across mention of “molecular mimicry,” and I thought maybe it was possible in the case of infections that feature such molecules, and in patients that have cervical ganglia dysfunction, that since the infection that the immune system (now totally unchecked by transferrin-aided antibody binding) is targeting resembles healthy structures in the body that all of these factors compounded could lead to ongoing destruction of healthy body tissue.

    It may be the case that I’m off base, or there are ways to easily prove false all that I’ve said, but I don’t know that. That’s why I’m posting, because in the unlikely event that this is not totally crazy, and might actually be plausible, it will be in the hands of people who can do something with it. A theory is judged by its explanatory power, and to me, this one seems to explain a lot. Could it be the skeleton key that unlocks understanding of these diseases and leads to new treatments and potentially cures? Is it simply that the cervical ganglia needs to be attended to more intensively when these disorders manifest?

    According to the literature, somewhere between 80-95% of Eagle’s Syndrome patients who undergo styloidectomies have complete cessation of symptoms. If I am right about the cervical ganglia’s role in degenerative disorders, and some of these patients’ styloid process was in contact with their ECAs and cervical ganglia, the neurological symptomatologies that presented may well have progressed into full-blown neurodegenerative disorder if left unaddressed. It could very well be the case that these successful surgeries represent instances of the curing of previously thought to be incurable neurodegenerative conditions. But again, Eagle’s syndrome merely represents one mechanism of action that could cause cervical ganglia dysfunction.

    I’d appreciate any response, even if it’s to tell me why I’m off base. I hope you’ve read with an open mind, and were willing to ask yourself “what if?” So, the question is: is it possible that superior ganglia dysfunction is the primary etiological feature of a host of neurodegenerative disorders? That this could be a unifying theory?

  • Dr. Reeves, I have Arachnoiditis. I’ve had falls, numbness, feelings as if water is running through my legs, eye twitches, horrible leg cramps, and bladder issues. I’ve not had a full MRI, and the last one I had they couldn’t figure out and said lumbar radiculopathy. I would like to have a full MRI, but the local neurologists don’t even want to see me once they hear “arachnoiditis “. This is becoming increasingly painful too. Any words of advice as to a course of action? Thank you. ��

  • Good info. I have severe cramping fasciculations and they are spreading. Calves, ankle, feet, shin, shoulders, arms, hands, tongue, neck. This all started after a botched C5/C6 fusion in ’08. During the worst episodes, the muscles that are affected will stiffen and cause a great deal of pain. When my hands are affected, the pinky knuckle is drawn down and inward causing a great deal of pain. Or, the muscle on the outer palm severely cramps. Usually, with my feet, my big toe is lifted and a great deal of pain follows. The most dreaded symptom is when my tongue cramps. I fall a lot. I still don’t have a diagnosis.

  • What about spots on the neck cervical spine? What other causes can mimic that if it’s not MS? I have Hashimotos but Drs are not pointing to that.

  • I’ve been telling my Drs for years that something is going on. I have symptoms that cover multiple diseases. I suffer from migraines since I was teen and have white matter. Recently I’ve started having a tingly/numb sensation all over my head and face along with the joint and all over body pain that I’ve had for years and tingling in my hands and feet. Tests always come back fine. I suggested MS but because the MRI didn’t show anything but white matter consistent with migraines they said no on that. The only thing that can get from anyone was fibromyalgia. The strange thing is when the tingling starts in my face sometimes my teeth even feel numb like I’ve been to the dentist.

  • Thank you so much for the really thorough explanations of symptoms and possible related diagnoses. I have Fibromyalgia Syndrome and it is a monster. I choose to manage it with diet changes, supplements, exercise as tolerated, breathing and meditation, cannabis products for pain. I still have Fibromyalgia but Fibromyalgia doesn’t own me. Again, thank you for sharing your wonderful and interesting knowledge of these complex chronic illnesses. ��

  • Thank you so much for this video, knowledge is power. I really appreciate you taking the time to help clarify other possibilities out there.

  • I have a mystery illness that made me suddenly bedridden. I hope you can give me a consultation long distance. I will be calling you.
    I was fine and energetic, running around every day and one night woke up with very heavy night sweats, a very sick feeling, itching like mad, and my heart racing out of my chest. I changed my bed clothes four times per night for weeks, unable to sleep. I couldn’t walk more than to the bathroom and back to bed, panting panting panting out of breath. And sweating! Drenching sweats. It happend when a huge 30 year old silver filling broke in my mouth and it was over two months before I could force myself to drag myself to the dentist to have it removed. I had been swallowing the filing bits for the entire time so thought it was mercury poisoning. It’s now been three years and I still can’t walk more than a few steps without panting and needing to sit down quickly out of breath. I’ve had checks from a cardiologist and blood tests and nothing shows up, they are all normal I also had the test for a blood clot in my lungs.
    I’m desperate. I live alone and have had to live on food from fast food joints as I can drive fine, I’m very coordinated. My car is a few steps from my front door thank heavens. I need help and can’t find out how to get it. Four doctors couldn’t care less that I’ve seen.
    I had a brain MRI about ten years ago with three oval white lesions on top of it and the radiologist wrote on the report “possible demylinating disease” when I had sudden double vison one night for a few minutes. But it never happened again thank God. I am now 66.

  • I have white spots but ms was ruled out. I have been diagnosed with fibromyalgia and cfs/ me but my neurologist says that I have a brain function problem but with no explanation why. I have many of the same symptoms of ms

  • My husband was also diagnosed with MS in 2001. We tried to get another Dr.’s opinion however our Dr. had sent our e mails to all the Dr.’s in town so none of them would see him. Here it is 2016 and he is still marked down as having MS.

  • I am curious as to if a diagnosed pontine capilarry telengeictases can actually be MS. My friend with MS said that I have all of the symptoms that people complain about in her MS group. I have had weird things that come and go for 14 years now, starting in my early forties.Thank you.