What if?
I was diagnosed in December of 2025 and recently seen my neuro for our 2nd appointment since. We were talking about relapses and there’s one event that I had to ask about. In 2024 I was in the hospital for a week because I couldn’t move my left eye to the left. It was just stuck like there was a wall but I could look right just fine.
I had to get 3 spinal taps (the first one in the ER was a fail, 2nd was able to get the opening pressure of 27, 3rd it went down to 22)
While they were figuring out what was wrong with me, I had to do MRIs and CTs to get a look at the cause. They noted demyelinating changes, just like my previous MRIs since 2022. They put it in my diagnosis list “Demyelinating disease of central nervous system, unspecified” I was eventually discharged with 6th nerve palsy and intracranial hypertension, but they couldn’t pinpoint a reason why it happened.
This visit I asked my neuro if this could’ve been a relapse and she said most likely.
This is where the venting part comes in
I just keep asking myself like what if they had caught that and diagnosed me earlier? I could’ve started medicine a year and a half earlier and probably wouldn’t be dealing with the daily symptoms I have now. I feel like I’ve been failed but I also get it because it’s not easy to diagnose. Just frustrating.
Anyone else kinda in the same boat?