What is your medical condition anyway
Lol what a question. βTo give you a solid answer on that would be giving myself one as well. You can go through my page and explore my rigorous medical journey that I've been through because I've been very open about it, sans a few things. All I can tell you is a plethora of conditions that I have that all seem to lead and point to a neurological issue(s). I've been sick since 7 years old, New Year's, that's 20 years officially this year.
I've been called a faker, I've done exploratory surgery, I've went through all the testing at UCSF (I THOUGHT) for all of the potential brain conditions I could have and I've recently found out that they haven't even done one of the most basic ones for the past 4 years. It's under many physicians believe that I have MS (multiple sclerosis) in order to prove this or to show this they would have to give an MRI. (I'm not a neurologist so I do not know the exact differences between contrast and without contrast until my cognitive prosthetic helped me understand.) When you do a brain scan / MRI without contrast you're looking at a brain and trying to find scarring that's been there for anything that's happened. When you're looking at a brain scan with and WITHOUT contrast you're looking at the difference between the two and seeing active inflammation potential. You can't see lesions (unless it's the scarring), or active inflammation on the brain unless you do a brain scan with AND WITHOUT contrast. I was told for the past 4 years that I went to UCSF that they did the brain scans with and without contrast and I just found out that I've been being lied to.
Why does it make sense for them to lie to me? (I'm not them so I can't personally tell you. All I can tell you is this:) They keep trying to get me to do lumbar punctures because, "we need more lumbar punctures" even though my family cannot tolerate that and it will cause further issues to my spine.. they know this, they do not care. They kept trying to push for another test that was a shocking test (ironically, the first test that they tried to send me for after they told me that I have functional neurological disorder, a fossilized phrase for hysteria... And when they sent that first test at UC Davis years ago that caused a cardiac event, 86% chance of a heart attack, and proof of scarring on my heart when I did a stress test right after that event where there was no scarring before...
They send you for shocking right after they think that you have fnd just like they did in the 50s to the women who they claimed had 'Hysteria' .. they only changed it from the name hysteria to a 'conversational disorder' when men started getting it and they had physical issues. Because MEN started complaining about PHYSICAL ISSUES after a certain amount of time, they no longer could simply call it "conversational" and had to change the name to "functional neurological disorder".. I have many physical problems like delayed vision in my left eye, (now they've just recently told me that I'm having functional seizures? Even though they literally told me that I'm not having seizures.. and in the same visit they told me that I'm just having migraines that I can't feel.. so as you can see I'm getting two different stories from the same exact people who are supposed to be the people with a degree and I even call them on it but they just look at me like I'm speaking a complete different alien language.)..
This seems like rambling because I'm not using my cognitive prosthetic to help me explain this to you because I want to get it out to you in the most truthful way my words can and I hope that it falls on your eyes in a way that you understand me. When my heart is stopping and coming back with a hiccup rhythm of two beats at once every single time (SVT) and I have pericarditis (inflammation of the pericardium), lesions in my stomach, now they're looking for lesions in my spine without actually telling me that that's what they're looking for they're just trying to do a lumbar scan on the MRI and won't give me a reason why.. I'm no longer seeing you UCSF after a 2-hour long interrogation That was supposed to be a 45 minutes appointment.. when you're seeing a new 'neurologist' and they don't even ask you to remember a single thing, stand up, shine a light in your eye, or even test your memory at all.. play with their name tag to the point that it falls on the floor multiple times, "ummm, uhh" for literally over a minute, and then accuse me of having 'trust issues' till later then pull it back and say 'I meant to say chest issues it was a Freudian slip' .. when I know what Freudian slip means, she literally just said straight to my face if that's what she was thinking but she didn't mean to say it out loud.. even my cardiologist said that it was a psych exam more than anything else it definitely was not a neurology exam. (He would know considering the fact that he worked at a top college unit in the multiple sclerosis sector to learn his residency on cardiology for over 10 years) π€·π»ββοΈ.. not to mention the fact that she scratched my fingers so bad that it took like a month to heal after she was playing with my fingernail for I don't know what reason lol.
So anyways, a lot has been going on over the past 20 years and I've literally just given you the tip of the iceberg.. if you think that that was a lot to read, imagine being the one living it π . If you think that it's difficult having to put up with, it's because it is. Life Is Life and you have to live the life and play the cards that you're dealt. π€·π»ββοΈ I just try to keep on keeping on as much as I possibly can and it looks like I'm at a point where I'm neurologically not going to get any help and my body is further declining unfortunately. I have heart issues, I have many different body issues, but my mental state? π― π₯ π The one thing that they can tell me is that I am sane which I laugh straight in their face when they say that and they tell me that I feel the way that I feel because you're not going to be happy after being sick for 20 years..
I'm in my own bit of despair if you can't tell but if I choose to sit in it that's all it will be β despair. I can't give you an answer of what's wrong with me because the top neurologist that UCSF can't even give me an answer that they agree upon for 4 years I've been told by one doctor and that team that I have functional neurological disorder and one day I go to a different neurologist at UCSF (who's supposed to be a teacher) who doesn't even know how to do a general diagnostic for a neurological exam. It is in her belief that I do not have fnd but she didn't even do the testing for fnd so of course she doesn't think that I have it. On that day of my appointment, it was in her belief that I had migraines that I couldn't feel. In her report? She said nothing of the sort. As a matter of fact, she said, "I have no diagnosis for you." π€£
I swear to God on everything, that is a direct quote. I have never heard a doctor so lackadaisical and uneducated in my life. I believe the word that she was looking for was, "idiopathic" but considering the fact that she was too busy infantilizing me she wouldn't dare use the actual verbiage of an adult in the English language. When she met me she didn't even shake my hand (I have to be in a wheelchair for distances because of my medical issues and passing out so much) she literally turned her side like I was a 5 year old at a desk in school and looked me in my eyes and said, "oh, I like your glasses!" ...... That's how it started and I was stuck in an interview for 2 hours where she was punching an ice pack like a psycho over 10 times to hand it to me because she felt my head was physically hot.. I've never had a doctor let alone a neurologist act the way that she did.
So now, I'm back into going to a different neurologist and this one that I'm going to will probably be the last one because I'm tired of playing games and stressing myself out for no reason. It seems like they're bent on not giving me help even though they have physical proof that there are things wrong with me they want to act like it's an emotional issue. I pass out whether I'm happy, sad, mad, scared, anxious, even sleeping.. (I did a sleep study and they found out that when I passed out they're technical knockouts.. I'm not falling asleep. It's the equivalent of getting punched and getting knocked out for a second. The doctors for all these years haven't told me what they're called not in the four years I've been at UCSF with the original doctor.. I go to the other doctor the one day who lied and said I had migraines and they tell me it's functional seizures (the name of the one second pass outs) .. I think that that doctor had no idea what she was talking about so I go to look it up myself and I find out that that is in fact what it's called medically π‘π€.. so I don't know who or what to believe.
Wish I could give you an answer with a pretty sparkly bow on top but unfortunately that's not what my life is and I highly doubt that that's what anybody's life is if they're being as honest as I have been. Even my primary care physician just gives me an attitude and is dismissive now (they literally telle I'm out of their scope and they just refer me to people.. they don't even do the general check up stuff anymore... Although they did test me for the eye twitching again and I guess I have Nystagmus? I don't know.).. I'll tell you more as I know more (or don't know more.)
Just remember, you asked.
Tldr what's my medical condition?:
Doctors not giving a single fuck about Humpty Dumpty. (Read above for an elaboration if you want to be such an ass to think that you deserve a summarized version of the hell that I've had to live through for the past 20 years. Poor baby, you have to read. π π€·π»ββοΈ) If my medical is too much for you "hang " as Kellin Quinn says, "There's the Door"
