Were you originally misdiagnosed before receiving a diagnosis of MS?
My symptoms match MS but my doctor didn't diagnosis me with MS.
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.
I first got diagnosed with vertigo which ended up being the indicator of my Ms or the start off of my ms. Because if it wasn't for that they wouldn't have seen then the MRI to see my lesions in my brain and in my spine.
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.
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 (MultipleSclerosis.net team)
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.I used rebif first but when tecfidera became available as a pill, I thought I would try that since it would seem easier. I began to have infections from every little scratch on my legs . I battled staph and mrsa constantly. I believe the pill formula was too fast acting where injections were slower to the blood stream as it was injected into the fat of the body. I had flu symptoms from the injections so there was no going back to rebif. I just gave up on it all. It has been a slow progression . Now I'm 62 and not had staph or infections again . I'm not sure if the progression would have been much slower but since my insurance had left me with a huge copay, I also decided I didn't want to embarrassingly ask strangers for money to help with that copay which is what I was told I would have to do. I'm not in great shape 20 years later but I have become a great procrastinator when it comes to my health. I suppose everyone is different but I just figured I could go back to taking the drug anytime. Now I feel after getting covid shots, it wouldn't be sensible to do both as they are dueling meds. One amps immune system and one kills it. vertigo is a normal ms system as your brain is most definitely effected by ms. That was my first warning sign I had that there was something going on. All other reasons for having vertigo were ruled out and it's been over 20 years and the vertigo is worse . It was diagnosed as acute positional vertigo. As my brain cloud got worse, so did vertigo.. your mri should reflect that
