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!

Comments

View Comments (9)
  • Iowbwy0224
    3 months ago

    I was diagnosed with mixed connective tissue disease about 7 years ago. My ruemotologist tried several different meds but nothing seemed to be effective. The weakness and joint pain has gradually increased until just recently when it has jumped into high gear. I literally feel like I’m on my way to becoming crippled. I’m 6’5″ tall, and about 210 lbs. I look healthy and I feel like nobody takes me seriously. I used to be able to “grinn and bare it” at work to secure my job but it’s becoming impossible to hide it. I really don’t know where to turn. My sister has very progressive MS and I’m worried that I’m headed in that direction. Does anyone have a suggestion?

  • Brandy G
    4 years ago

    I was first diagnosed with Intracranial Hypertension. During a spinal tap for that, my neuro decided to test me for MS. Two weeks later I got a slap in the face with a diagnosis of MS and CIDP (chronic inflammatory demyelinating polyneuropathy). Three illnesses that have no cure, maybe, just maybe one of them will have a cure in my lifetime.

  • PamsaRN
    4 years ago

    I am currently 48 yrs old. I can remember periods of time in my late teens (18) that I would be overly exhausted by end of day. Happily married at age 21 we had our first child. About a month or so after I gave birth I felt so exhausted, achy and feverish, hurting joints, and hypersensitive feet.I would jump if you accidentally brushed by my knee or touched my foot. I feel down the stair case. My legs just went out from under me. So doctor #1 was a HMO Dr. (when u had to have referrals and everything was a pain) the female Dr did a exam , took blood work, and started me on anti inflammatory. When I went back in she said, “I had Lupus’ my ANA was positive but, there was really no test for a absolutely positive dx. My follow up vist the female Dr was gone and a Dr.(#2) who had to be in his 80’s came in the room.I was so exhausted and lying down on exam table. He sat down in chair next to me looked through my file and said “You don’t have Lupus you are suffering from Postpartum depression”. I stared crying my eyes out. Explaining I was a happy mother. I could have punched him right in the nose.He wrote me a prescription for a anti-depressant. I threw it away.The next Dr. said “He thought I had Fibromyalgia”at the time everyone related Fibromyalgia with hypochondria. Dr#4 a neurologist agreed with the FMS dx and started me on gabapentin,Prozac,and lortab for pain. It seemed each visit I had new symptoms. Numbness, tingling, burning pain on skin that felt like hot oil being scrubbed with sandpaper.He did a MRI of brain but, no contrast and no cervical. After about a yr I finally told my Dr. that my bladder hadn’t been working for at least a yr and was progressively getting worse(reason for not telling dr…I didn’t want to be labeled as a hypochondriac.Dr#5 a urologist looked to make sure my bladder was sitting in correct position and no obstructions. It came back perfect. Next, he did a urodynamics test. They filled my bladder up with 700cc of IV fluid, they put patches that look like EKG and measures how hard you are pushing with your muscles.For 20 minutes I tried to start a stream of urine and couldn’t. The Dr asked me if I had ever been in a car accident that involved spinal injury….NO, sir I have not….Do you have diabetes, No, sir I do not…He said the only other thing that causes a neurogenic bladder which is what you have.. is Multiple Sclerosis but, I just had a MRI of brain I said and it was normal…he asked about contrast, cervical and lumbar pics..I said, no none of those. He stood up and said “I am putting your neuro on notice….you have MS and need a spinal tap and MRI with and without contrast. Well, lets just say my neuro was not happy with this…and when I went in to talk about it and get paper work for test he said,”I will NOT put you on MS meds if test come back normal. Two weeks later my spinal tap was positive and my Lumbar MRI had spots. It took me 10 yrs to get a dx. Ten yrs of people saying you look great and I felt 90, Ten yrs of me questioning myself. The first wk after I was dx I was relieved to know what was making me feel so bad. The next week it hit me and I cried and cried.Sorry, this was so long but, if one person reads this and it helps them to demand answers then it was worth my sharing.

  • Sarayvonne
    4 years ago

    I was originally told I had a pinched nerve. In the ER after having what they are still calling “psychogenic seizures” I was given a Valium and sent me home. Later after showing my neurologist a video of me having a “psychogenic seizure” a movement specialist told the doctors and I that people with MS sometimes have unexplained spasms and movements.It was still recommended that I have therapy to control these movements. Without pushing the doctors to please image my brain they would’ve never found the lesions in first my brain and then my spine. Advocating for myself somehow got me an early diagnosis and may save me from further degeneration.

  • Sue D
    4 years ago

    There were MRIs, but nothing on the market then but Betaseron lottery. So what WOULD have been diagnosed as MS was blown off, even when there were clear, albeit small, lesions. Mine were t-spine, very hard to see in those days. Finally after years, one of my doctors made a decision. He said that before MRIs, clinical diagnoses of MS were and he felt were rarely erroneous. But prior to that, I was a “probable” for years, getting worse.

  • Lisa
    4 years ago

    i was diagnosed with parkinsons, demylinating disease and something containing man.

  • Carrie G.
    4 years ago

    My experience was the opposite. First, I was diagnosed with PPMS. After being close to death I went to a holistic MD who found I had Lyme’s disease. Treatment for 18 mo. w/IV antbiotics saved my life. Next was systemic mold infection, and treatment with anti-fungals cleared my cognitive symptoms. Next was fatigue. Epstein-Barr viral loads were 10,000 that of normal. Treatment w/ Valcyte anti-virals improved viral loads 75 o/o and fatigue was no longer an issue. Now my ‘PPMS’ has been stable for 8 years!!

  • Wendy
    4 years ago

    I was told I had spinal stenosis and a compressed disc. I had my spinal cord opened up and a cervical fusion done. This diagnosis and surgery was done by a “world renouned” neurosurgeon.

  • Joys-An
    4 years ago

    I was told I was lazy and crazy form a very early age!

    In eighth grade our family doctor put me on “nerve” medicine and told me not to ever run out of it or I would fall apart!!!

    I was told that I just needed to work on my “sh*tty personality” and to “go somewhere else” because he didn’t know what to do with me. This by a therapist!

    One doctor told me I would be in a wheelchair by the time I was forty, but wouldn’t tell me why he thought that. I only saw him once.

    My mom would say to me, “you were just born sick and never got over it”. We can now trace my symptoms back to when I was a small child. I wasn’t finally diagnosed until I was 52 years old, the week after my mom died. So she never knew I have MS.

    The doctor who diagnosed me said that I needed to see someone else for my cognitive problems and severe pain because MS didn’t cause either of those.

    When I filed for disability the doctor I saw for a neuro-pyche evaluation told my attorney that I was faking it because I cried through the entire visit. My attorney was certain I wouldn’t win until I fell asleep during my hearing with the judge!!

    Like too many others, I could go on and on. And I could be very bitter if I let myself. But my life is more than half over and I have a 14 year old grandson who still likes to hang out with me. So, I try to put it all behind me and take one day at a time with a smile on my face, whether I feel like it or not.

    Thanks for providing a place to hang out and rant when we need to.

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