Been with you guys since 2016, but I’m in a bit of a pickle so I’ll just start over.
In early 2016, I got really sick.
-migraines, like couldn’t open my eyes, up to three weeks in a row with no relief
-confusion, forgetting where I was
-Forgetting easy words
-forgetting what I’m saying
-Very hard to understand speech
-Stumbling over words
-Facial numbness on the right side
This went on for a few months before I decided I must be going crazy, and I should see a doctor. I immediately got an MRI and they told me they found a left frontal AVM, and scheduled an angio. And yep. AVM. My neurologist suggested seizure medication (after trial and error I’m on Keppra) but eventually my neurologist left the medical group. After that I bounced from mean neurologist to arrogant neurologist, to ones who wouldn’t listen to me, etc. So I decided to switch medical groups with my insurance to get better care.
Fast forward to 2020.I met with an interventional neurologist who specializes in AVM, for him to tell me what he sees on my scans are NOT an AVM, but he wants more images to be sure. I got new MRIS and was yet again told it is not an AVM. Apparently it is a developmental venous anaomoly (DVA) But what’s weird is they said that they do not present the symptoms I have been experiencing for the past few years. If they match up exactly with an AVM, then how is it not one? How is what I have…something that was “found incidentally” and “shouldn’t be causing you problems”
I’m not sure if I’m posting this for help, or to just rant, or whatever. But I can’t seem to find anything that resembles an AVM that definitely isn’t one. He told me to find another neurologist who can help me, and at this point, I don’t know who can. I’m 23. Any normal 23 year old is not experiencing a single symptom such as these. Any time I search my symptoms the internet’s answer is an AVM
So back to the drawing board I go. I’m hoping even one person on here can think of something else that is causing my symptoms. This just doesn’t make any sense to me and I’m just left with an insane amount of confusion.
I also hope I still belong here.
All my love,