How long to get diagnosed
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 😬😬😬
Achieve your health goals from period to parenting.