Misdiagnosis and MS – Community Experience

When it comes to MS, there are multiple obstacles that get in the way of an immediately accurate diagnosis. Here at MultipleSclerosis.net, we find sharing our experiences quite helpful; it’s comforting to know you’re not alone! So, we asked our Facebook community: “Were you originally misdiagnosed before receiving a diagnosis of multiple sclerosis? What were your first told that you had?” Over 300 people were kind enough to respond! Some answers may surprise you – or they may be all too familiar. Take a look at what our community had to say…

I was given a diagnosis for other physical conditions:

  • Lupus
  • Carpal Tunnel
  • Lyme disease
  • Fibromyalgia
  • My mom was told everything from clinically depressed to mini strokes.
  • My daughter initially was diagnosed with Mixed Connective Tissue Disease
  • Fatigue syndrome
  • Inner ear infection
  • Cushings, Mixed Connective Tissue Disorder
  • I *do* have Sjogrens, one doc said all my symptoms could be explained by that…nope
  • I was told that I either had a spinal cord tumor or MS
  • FMS, MFPS (myofacial pain syndrome)
  • I was told I had a stroke
  • Knee injury
  • Bursitis
  • Pinched nerves
  • Primary lateral sclerosis
  • Sensory disorder
  • Migraine damage to my brain
  • Inflammation in spinal fluid
  • Hypochondria
  • Silent migraines
  • Mild TIA
  • Sinus infections
  • Bell’s Palsy
  • A nerve caught in my C7
  • Shingles (without the outbreaks)
  • Shingles (with the outbreaks)
  • Guillain–Barré syndrome
  • Neuro disorders
  • Hashimoto’s Thyroiditis
  • Severe PMS
  • Vitamin B deficiency
  • Virus
  • Optic Neuritis
  • Degenerative disc disease
  • I was told I had an abscessed tooth. And they pulled it!
  • Transverse myelitis
  • Rheumatoid Arthritis
  • Myasthenia Gravis
  • Seizure disorder
  • Cat scratch fever
  • Epstein–Barr
  • Narcolepsy
  • Herniated discs
  • Paroxysmal Dyskinesia
  • Possible brain tumor
  • Calcium on the brain
  • Balance issues
  • Occipital infarct
  • I was told I needed a back surgery
  • For the spots on the brain, they said it was nothing
  • Emergency Department visits went like this: 1) Nothing 2) Muscle Spasms 3) Something else
  • Horner’s Syndrome
  • Brain cancer
  • Epilepsy
  • Blown disc in my back
  • Palsy of the 6th nerve
  • Central Rotary Mastitis
  • Devic’s disease
  • Migratory arthritis
  • Classic sacroiliac joint dysfunction
  • Neuropathy
  • Candida overgrowth
  • Antiphospholipid Antibody Syndrome
  • Sciatica
  • Post partum
  • OPLL – a severe growth on cervical cord and all symptoms due to that
  • Possible diabetes
  • Plantar Fasciitis
  • AIDS. They told me my son he had aids, then asked if he’d been bit by a mosquito.
  • PHN
  • Ménière’s disease
  • White Dot Syndrome in my eyes
  • Saturday night palsy
  • Capillary telangiectasia located against my brain stem
  • IBS, Interstitial cystitis, and Iritis.
  • Transient ischemic aneurysms
  • Back sprain
  • My mom was told she needed two different back surgeries
  • Spinal cancer
  • Mitochondrial disease
  • Muscle ache
  • Labyrinthitis
  • First thoughts were IBS or fibroid issues
  • Polio
  • Nerve damage in my legs and hands
  • Psoriatic arthropathy
  • An ependymoma on my spine
  • Idiopathic peripheral neuropathy
  • I was told my pain was due to breast cancer
  • Benign paroxysmal positional vertigo
  • Sarcoidosis and Behcet’s disease


I was given a diagnosis related to mental health:

    • I was told that my parasthesia and dizziness were caused by anxiety. I suffered with those symptoms and more, thinking it was all in my head for 20 years.
    • I was told it was completely psychosomatic!
    • “It is in her head, she is lying, teenage hysteria” (who ever heard of that?)
    • Side effect of my monthly (since that seemed when my symptoms most showed up.)
    • Depression
    • Stress!??!!
    • Occupational Hazard”
    • Psych problems
    • I was told I was crazy and it was all my imagination
    • Anxiety attacks
    • Stress from moving to another country
    • They told my son he was bipolar with schizo affective disorder and ADD
    • Too sensitive, imagining things, was too busy, not busy enough, needed muscle relaxants, needed more interests….
    • I cry as I write this cause they said I had Munchausen syndrome
    • Initially, I had a doctor ask if I had been abused or gone through something very traumatic and perhaps was suffering from PTSD!!!
    • Major depressive disorder with borderline personality traits
    • I was told I was a liar… Then mentally ill and should be locked up

I was told miscellaneous, and sometimes insulting, remarks:

  • I was told that nothing was wrong with me that having a baby wouldn’t fix (no joke)
  • “It’s all in your head”
  • “We don’t know”
  • They said, “You do come from a family with a history of mental illness, you know” or “Well, dear, some people are just naturally clumsy. You must practice better posture!” or “Why can’t you just learn to live with this? Everybody has something!” Right.
  • For not sleeping, they said I was a “nervous new mom”
  • I was told fatigue and needed a vacation
  • The doctor told my mom that I must be overly worried
  • “Maybe if you were more positive you would feel better”
  • I was told I’m just tired because I’m a teacher
  • Doctor after doctor told me I was just getting old
  • Doctor said lumbar MRI was “just average aging bulging discs,” Podiatrist said, “All older people have numb feet”
  • I was told I needed a career
  • I was told I was too fat – to lose weight and my left leg won’t be numb anymore (I was only 10lbs overweight)

How about you? What was your path to diagnosis like? Share your experience in the comments below!

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