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Diagnosis Journey

Happy Friday! I’m new to this space. I’m currently in the process of ruling out what could be going on with me. This post will be a bit long but figured this is a safe space to get it all out. Late Jan 2021 was when I experienced some of my first symptoms. My left upper lip had some numbness. I didn’t think much of it as I thought it was a reaction to a mask that I probably didn’t get all the detergent out of. A week or so went by and the numbness got more intense and then my left cheek began to have the same numbing sensation. The numbness in the left side of my face then spread to my left temple and left side of my tongue. About this time, I’m freaking out a bit and make an appointment with my PCP/GP (early March 2021). At first, they thought I had a stroke. They ordered an MRI for my brain (without contrast). As all this is going on, I’m starting to get more symptoms (I’ve listed all symptoms below). PCP calls me and informs me that she needs to refer me to a neurologist. I’m thinking that’s not good. I see the neurologist mid-March. She orders another MRI with contrast and some blood work. Follow up appointment after MRI didn’t go so great. She was dismissive and stating it could have been an infection. Tells me we will do another follow up in about 3 months. My symptoms lasted until mid-May 2021. So, by the time the follow up appointment comes along I’m feeling a lot better. Neurologist states since I’m feeling better, she will see me in a year. Fast forward, June 2022 I begin to have symptoms again with some new ones. I schedule an appointment with the same neurologist from 2021. Go through everything and she states all this could be from headaches. I told her I’m having the same issues as last time but add a few new things. I stated she indicated it could have been an infection last time and asked why it would now be headaches. I asked if we could do another MRI. She said, “We won’t do one on your brain since we did one last year, but we can do one on your cervical spine.” I was extremely frustrated and just wanted to leave. I searched for a new neurologist that same day. Cervical spine came back clean. I found a new neurologist and just had an appointment a couple of weeks ago. Let’s just say it’s night and day! The new neurologist went through her thoughts of what it might be and gave me a game plan of tests to figure out what’s going on. Starting with blood work and MRI of brain and T-spine. Then an EMG test and then lumbar puncture if everything comes back clean. She stated she wants to leave MS on the table but of course you must rule out everything else before saying that’s what it is. She stated, “we will work together to get to the bottom of this.” I just had the MRI of my brain and t-spine this past Thursday. I’m trying to keep my anxiety down as I’m waiting for the results. I’m also trying to not have any expectations and remain patient. But of course, I’m wanting answers. I’m starting to feel better from the symptoms this go around. I still deal with muscle weakness, spasms/twitches, and daily level 1 dull headaches. It’s interesting reading and hearing others diagnosis journeys. Thank you all for your time in reading and hope you all have a great weekend. Late January 2021 to Late May 2021  Numbing of Face (left side: lip, cheek, and temple)  Numbing of Tongue (left side)  Eye Pain (mostly left eye)  Tingling of fingers and toes  Pins and Needles  Muscle Weakness  Joint Pain  Pressure in head (top)  Cold arms, hands, legs, and feet  Muscle spasms/twitching  Numbing in Left Arm (pinky up to elbow)  Fatigue  Dizzy (vertigo)  Uncontrollable Eye Movement  Lower Back pain  Stiffness in Fingers  Headaches/Migraines  Trouble Concentrating / Brain Fog  Mood Swings / Irritable  Electric Shock Feeling (especially with hot and cold water) June 2, 2022 to present  Muscle weakness / stiffness  Joint pain/stiffness – fingers, ankles, etc.  Bone pain  Dizzy (Got up too fast feeling) which makes me unbalanced  Dizzy with eye movement / Vertigo  Numbing in left arm / left leg  Uncontrolled jerking movement (legs, arms, and head)  Itching  Pins and Needles  Heavy Legs (feels like I’m wearing ankle weights)  Jell-O Legs when walking  Headaches (front of head) / Migraines  Eye Pain (left eye) (sometimes it just feels like eye fatigue or as if it is burning)  Fatigue  Trouble concentrating  Sever sinus pressure  Lower back pain (sharp, unable to stand for more than a minute) left side  Muscle Spasms / twitching  Left ear / jaw pain  Hard time falling and staying asleep (June 20)  Cold arm and hand (left)  Numbness in face (left cheek)  Neck Pain (upper left)  Ear and head burning – left like liquid was coming out of ears  Blurry Vision (right eye)  Groggy  Skin Crawling March 2021 Brain MRI findings: Brain parenchyma demonstrates interval improvement but subtle residual linear signal abnormality along the anticipated location of the main sensory nucleus and the left trigeminal nerve. Two stable punctate foci of right frontal subcortical white matter hyperintensity, the more inferior of which is better visualized given current 3T technique.

Hello, if the diagnosis is MS or something else just remember it lives inside u but does not define you!🧡


Hey ur symptoms sound like me and up to yesterday I was diagnose with MS. Not sure how that works when a new doctor claim you don’t have something from one visit and know recent test done not since last year while being hospitalized. I pray for you and I pray you continue with this great doctor because they are hard to come by. Always believe In yourself because other people who aren’t sick won’t understand. 💝🙏🏾