What's Your Diagnosis Story? Share Your Experience

i’m late to the party, but i actually had no symptoms when i was diagnosed! i was 15, maybe 16. i developed tourettes at the very beginning of quarantine. a few months post diagnosis, my mom wanted me to get an mri, as she was concerned with the sudden onset of tics, that it could have been a tumor instead of ts. everything went well and i was doing great, just ticking my way through life as per usual. then we get a very ominous call from my neuro about making an emergency appt. i had very few lesions on my scan, so it was caught early. did seven million blood tests, another mri on my spine, and two horrific spinal taps. 4 months later i was diagnosed with ms. i had my first relapse in august of 2021 and since then have been dealing with a great deal of cognitive issues, most of which revolve around my short term memory and brain fog. i feel very fortunate to have been diagnosed when i was, we weren’t really fumbling to find a treatment, even when whatever one i was on didn’t work.

I think mine started about 2 years ago. I went blind in my left eye. I thought it was due to when I got hit with a baseball when I was 8. I ended up getting cataract surgery in that eye. Toward the end of last year I started having really bad memory problems. I ended up getting an three MRIs and a lumbar puncture. The doctor diagnosed me with RRMS at the beginning of this year. I'm actually glad I don't have what my mom was diagnosed with 3 years ago, Alzheimers. My walking is doable, but my main problem is cognitive issues. I get really bad brain fog, slow speech, I get depressed, I can't remember things, I get tired quickly, and I get irritated for no good reason. I have also recently had tingling in my left hand. I hope that eventually goes away, but we'll see. As far as I can tell I ended up getting MS from the Epstein-Barr virus when I got mono in college about 12 years ago. Apparently there is a link there.

I’m so sorry to hear what a tough time y’all have had. I had numbness on one side of my face that wouldn’t go away in early 2014. People were telling me it was probably just my sinuses, but I know what a sinus problem feels like for me and that wasn’t it, so I went to the doctor and she ordered an MRI. She thought it could be migraines since I also had headaches. When I got the call saying it could still be migraines or it could be MS, I lost it. I barely knew anything about it beyond what I saw watching The West Wing. She referred me to a neurologist who had me get another MRI with contrast. He promised me that I would never get bad news on the phone, but that clearly wasn’t true. I got a call while I was at work from his assistant and before I could even step away from my desk to get some privacy, she told me the doctor was confident that I had MS and asked if I wanted to come in for an appointment before the lumbar puncture or if I wanted to wait until the results visit. I had zero desire to see them any more than I had to, so I told her I wanted to just do the lumbar puncture and then the results visit. I then promptly started walking away and burst into tears on my way to the bathroom. I told my boss everything(which I regret) and he sent me home for the rest of the day. The day before my 25th birthday, I got the lumbar puncture and a few weeks later I got the diagnosis. Actually getting the diagnosis didn’t upset me so much, I had pretty much accepted it and I just wanted to get diagnosed so i could start treating it. The neurologist would only talk about the one injection that he got a kickback on, so he was really no help when it came to deciding how to treat. Eventually I decided to start with betaseron because it had been out the longest, so I figured it would be safest and as soon as I got started on that i stopped going to that neurologist. After awhile I started with a new neurologist and switched to Gilenya(oral) and things are going pretty well

A visual disturbance in 2019. I was told that it was retinal ischemia due to an auto immune ailment (mctd or lupus) Then nothing else was done for me fast forward to April 2021 I started losing sensation in my pinky and then in my ring finger on my left hand. I was given a nerve conduction test in which I passed however the symptoms still remained and nothing was done for me again fast forward to April 2022 now I've lost sensation in my whole left hand my whole right hand down my body so my torso legs and feet that's how I ended up in the hospital where the journey for diagnosis started. Lumbar tap (normal) & MRI showed tons of lesions 😥