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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.

  1. 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.

    1. 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.

      1. 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)

        1. 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.

          1. I actually believe you might be in error stating that vertigo is not normal symptom of ms. Vertigo was my first initial symptom and now, 20 years later it's one symptom that seems permanent. I am not on dmt and haven't been for years so that could be the reason. But doubtful. It's a major symptom that never goes away. I'm completely miserable.

          2. Sorry to read that, I have found oxygen therapy helps me with vertigo, I am on Ocrevus and oxygen therapy. I have tried acupuncture for balance, that was good, but oxygen therapy seems to help me better. We do have a charity here that's helps with the oxygen.
            I now volunteer for them as an Oxygen Operator.

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