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Were you originally misdiagnosed before receiving a diagnosis of MS?

My symptoms match MS but my doctor didn’t diagnosis me with MS.

Community Answers
  • Tazz
    2 years ago

    I wasn’t exactly mis-diagnosed, just MS was not considered to be at all likely – two neurologists basically said “it won’t be MS – you’re too old, and it doesn’t fit the “pattern”, and we just need to “rule out” MS”. Yeh – right – female in her mid 50’s, no episodes that fit with the clinical definition for relapses, but symptoms that I now know are entirely consistent with the onset and progression of PPMS. My first Dr visit re my symptoms was related to balance and “dizziness” – more of a spatial disorientation than dizziness, but the the ENT I was referred to said it was probably BPPV, even though none of my problems or symptoms fitted with BPPV. I subsequently did develop BPPV after an ear infection, and I can now be quite clear that none of my symptoms were at all like those of BPPV.

    It was not until the 2nd neuro I saw actually viewed my first MRI images that MS was seriously considered and diagnosed. This was 4 months after the scan was done, and after he had already been sent a radiologist’s report noting multiple brain and cervical spine lesions consistent with a “de-myelinating disorder”. (The first neuro I saw told me I needed a heap of tests such as MRI, nerve conduction studies etc, but never got round to organising for them to be done!!!). My first MRI (ordered by neuro No 2) was so absolutely conclusive that no further tests were required, as my symptoms and their history, plus all of the lesions in my brain and spine met the McDonald criteria for an MS diagnosis.

    My new neuro (No 3) agrees that my MS has been PPMS since the start way back in around 2006. However, the lack of any clinical definable relapses meant I could not get access to specialists or the diagnostic tests of any kind, and MS wasn’t even on my GP’s radar. So, it wasn’t until worsening functioning of legs, bladder, and balance, plus some peripheral neuropathies got so bad that something had to be done that I finally got to see a neurologist. My first MRI and actual diagnosis did not happen until 2013.

    Accordingly – I think there needs to be much greater awareness out there in “GP Land” of PPMS as a possible problem when people present with symptoms that could be MS. This need for greater awareness is especially important because the statistics are that the diagnosis rate of MS in older people (i.e. over 50’s) is increasing quite significantly, and there are now starting to be some drugs that can be used, but without a diagnosis you are still stuck in no-mans land.

  • Stephanie J
    2 years ago

    I was diagnosed with unexplainable numbness for 10yrs before they found my real diagnosis of RRMS! What is unexplainable numbness, doesn’t something have to be making you numb?

  • Niko
    2 years ago

    Hindsight is the key to *my* MS.
    One day, on a Fall afternoon, I decided to take a walk in the neighborhood. While walking on the sidewalk – I noticed I couldn’t walk a straight line; I kept veering off to the right. I tried to aim for a rear brake-light of a parked car near-by; I couldn’t get there. Once home I told my husband the tale. We both thought that was very odd. Other than veering to the right I felt fine.
    In less than two days – I became very, very ill. So very dizzy – I couldn’t walk, hold anything, read anything… I was taken to my primary doctor. I was diagnosed with an inner-ear problem and referred to an ENT.
    I was in bed for a month, the medicines that I was given by my primary, finally took effect.
    The ENT ran many tests during the exam.
    The diagnosis — Meniere’s Disease – a rare inner-ear disease with the end result being Deafness.
    I could hear fine.
    Several months later I could still hear fine, my dizziness was gone…but –
    I developed what I still describe as the “glovey feeling” — imagine wearing heavy winter gloves and try to write, hold a fork.. etc.
    Back to the ENT – she ran a few tests and recanted the Meniere’s diagnosis and told me to see an neurologist.
    {skipping the lengthy time for that followed}
    Many months later I was diagnosed with RRMS.

    Vertigo is not a ‘normal’ presenting symptom of MS.

  • DonnaFA moderator
    2 years ago

    Hi Niko! Thanks for being here and joining the conversation. Please know that you are absolutely not alone. While vertigo is not a common symptom, it is not all that uncommon either. We have several articles on the site in which members describe experiencing vertigo. Sending warm wishes your way – Donna ( team)

  • DonnaFA moderator
    2 years ago

    Hi! Please know that you’re not alone. MS can be quite the mimic. Many of our members suffer through years of being misdiagnosed. You may be interested in reading some of the stories shared by our wonderful community. You may also be interested in checking out our article How Do I Find a Doctor? Help is Here! for information to help you connect with an MS doctor in your area. We’re glad that you found us and we’re always here to share support and information. I’d like to invite you also to join the conversation on our Facebook page as well. -All Best, Donna ( team)

  • Lisa Emrich moderator
    2 years ago

    My MS diagnosis took many years. I was first diagnosed with optic neuritis; not really a misdiagnosis, but the neurologist didn’t order an MRI of my spine because it was my eye that was having problems (blindness). Sometimes I wonder if I might have been diagnosed with MS sooner if a spinal MRI had been done initially. Even to this day, all of my lesions have been in the cervical spine with none in the brain. It just took longer for spine-related symptoms to develop and point to MS.

  • Kim Dolce moderator
    2 years ago

    Not exactly misdiagnosed; I was diagnosed with cervical myelopathy, which was the 1999 name for Clinically Isolated Syndrome. And I was diagnosed with herniated cervical discs, which can caused similar symptoms. These diagnoses were accurate, it’s just that it took six more years to have a second MS attack and an MS diagnosis.

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