I am sorry this is long ugh.

I am undiagnosed. Been dealing with a lot of variable symptoms for the last four years. My primary and my neurologist are convinced I have MS, but say that I may be too early and am unable to get officially diagnosed.

I am wondering if I could gather some insight for all of you lovely warriors. Did it take anyone a long time to get diagnosed?

My neuro-ophthalmologist was actually very concerned with me at my first visit, he ordered an MRI and I was supposed to follow up in a month but they called me today to come in this week (my MRI was Monday) so not sure what to expect. I did peak at my results and I’ve had a few changes since my last scan two years ago.

I will list my symptoms from oldest to most recent-maybe I will sound familiar to someone. All of my symptoms linger but exacerbate to unbearable.

2015

-Left ear fullness

-tinnitus

-left facial numbness

-crippling fatigue, I can’t sleep enough ugh

mri brain normal, just hyper-intensities

2016

-left leg starts to feel heavy

-my gait completely changed-

-my left hand starts to feel heavy and weak

-dexterity completely decreased.

high doses of steroids helped me feel better

MRI shows one lesion

neurologist blows me off tells me to loose weight

2017

-I start tripping over everything

-dropping everything

-Brain foggy

Few doses of steroids that year help me feel better

2018

-same stuff just happening way more often

-Super bad left eye pain, tunnel vision, blurry vision, tunnel vision.

More hyper intensities on MRI

2019-

-new neuro (I love her) she’s already having the MS talk with me on day one

-my pupil does not react to light correctly on her eye exam

-skin biopsy shows significantly reduced nerve fibers????

-LP negative for bands, have a high myelin basic protein level though...ok maybe not MS

-EMG... normal

-NP Tries to tell me she thinks I have epilepsy...neuro totally annoyed with that and cancels tests 🤣

2020-

-Neuro back to square one ruling everything out, concerned that me EBV titers are through the roof...Says there’s a loose association with EBV virus and MS..convinced I still have MS

-See the neuro-ophthalmologist because my eye is really making me miserable now

-Neuro-op super concerned with the size of my left optic nerve... he actually said the words ‘hmmm interesting 🧐... have multiple blind spots in my peripheral vision on the visual field test.

-MRI this Monday shows a focal lesion on my left optic nerve, a lesion on my brain, multiple intensities, and a ‘frontal vascular anomaly’

-now they are calling me to come in early 😬😬😬

MS Support