Hello forum world for people with too many issues to fit on an A4 paper!
I'm new here.. but not sure if I'll be staying :/
So I've been struggling with cognitive impairment for 2 years now. It started out with loss of notion of time and memory loss with a weird neck/head pain that they called tension. I was diagnosed with migraines at first but it didn't quite fit.
After about 9 months I thought I was going to lose my mind so I decided to go to a neurologist. The neurologist did an EEG which came out abnormal. She said either you have a mass or you have epilepsy. We did an MRI and a PET scan. The MRI was clear, and the PET scan not but they never seem quite worried about the PET scan. So no mass... on to epilepsy.
Thing is I've never had a seizure. Yes, I've had weird moments that I can't really explain where I just don't really understand whats going on and I can't understand anything. I get this horrible weird sensation that goes through my forehead. However, I tell this to the neuros and they don't go "THATS DEF EPILEPSY!" .. they go.. mmm maybe?
I've just never quite been a clear fit. However, I have memory loss, I lose my words, I sometimes have trouble reading/concentrating, I lose notion of time, and I am sometimes unable to comprehend the simplest of logic.. as in "so my grandmas sister..." and I'm like "sister what?"
So about 8/9 months of epilepsy treatment that wasn't successful .. a lot more tests came along .. 5 day eeg, spinal tap, more MRI's, more PET scans, two neuropsychology tests, tonnnns of blood tests etc..
The second diagnosis with no proof as my spinal tap (horrible horrible thing with awful side effects) was clear was autoimmune encephalitis.. so safe to say that treatment for that didn't work either.
After that the neurologist literally said.. "well you finished university so it must not be that bad" .. even though I felt bad, the neuropsychology test were bad and my EEG's are awful.. but okay.
So I took matters in my own hands and looked up different things...I came across Fibro which made me think I should see a rheumatologist as the neuro symptoms were just the worst ones... I have stomach issues (reflux since 2010), lots of palpitations since 2010, problems breathing (since young teens), my bladder is wrecked (since 2014-15) (I need to pee all the time its awful and the bladder itself is so painful when its full), I'm constantly in pain .. back neck hips shoulders legs( since 2014-15) .. you name it.. and trust me it probably hurts.
So rheumatologist saw me and noticed my super flexible fingers, hands, legs, arms. Noticed my scoliosis and my wrinkly hands (I'm only 25 but since I was a teen my hands look about 80)
Anyways theres a ton more little symptoms such as bleeding gums and etc.. but this is already very long ( I apologize!!!)
So I ended up seeing a specialist in Paris because I was in Brussels at the time and they have no specialist there and as far as I know none in Edinburgh either (where I study). He was super sure I had Ehlers. So I began emailing all my past doctors to let them know. The neurologists that told me to just move on basically.. they said "okay good day" but the one neurologist that has seen me since the beginning basically said that the school of thought when it came to Ehlers Danlos was very new and not entirely scientifically proven, and thus, doesn't believe everything the professor says about ehlers. So he wants me to do genetic tests.. which is fine. I figure I'll just see both because I get his point that its a bit dangerous to go and settle for one diagnosis in case I were to get worse, and its not that. The specialist agreed that it couldn't hurt to see a neurologist as well but he said that it has been reported (eventhough rare) that just like people with Ehlers sometimes get "fake" asthma .. that they can also get "fake" epilepsy which shows abnormalities in the EEG... would literally love to meet these apparent cases.
So I guess my question today.. (in short after this essay I've just written haha) is there ANYBODY ELSE OUT THERE with an abnormal EEG and these insane neuro symptoms?
I've just literally not met anyone remotely like me, with symptoms similar to mine.
After two years that gets quite lonely because no one can understand and no one can relate.
Anyways, hope you are out there other weirdo case no one can understand I would love buddy haha
Hope you guys have a good evening!