#but everything is scheduled now! MRI and follow up appointment and hematology

[tj-crochets]

Hey y'all! Weird question time again! I will be having my first MRI in a few weeks (specifically, an MRI of my brain) and I know nothing about it except No Metal Allowed. I will not be getting the contrast dye on account of I kicked up a fuss about potential anaphylaxis* and the doctor was kind of like "fine but if we find anything and need a clearer picture you'll have to get another one" Do you have any advice/suggestions/things I should know about MRIs? *if, as several doctors have suspected, my weird allergies are MCAS there is a good chance I am severely allergic to the dye. Also I am a bit paranoid about injections in general because my allergic reactions to injections are waaaaaay worse than my reactions to food, pills, or environmental allergies

[autumnalal]

when i suddenly lost my ability to walk, had uncontrollable movements of my neck and spine, and started to lose some of my vision, i went to the hospital (like one would expect). i got an MRI of my head and wheeled back to the hospital bed. twenty minutes after my "speed MRI" (12 minutes without, 3 minutes with contrast) the nurse-practitioner who saw me waltzed in the room with a bounce in her hair, flipped on the fluorescent lights (I have photophobia, so bright lights are painful, which i explained to them), and clapped her hands together, cheerily informing me: "great news! your MRI is normal. i think your symptoms are likely anxiety related." instinctively, i responded, "there is no way in hell––no offense––but there is NO WAY in HELL that me losing my ability to walk and my vision going dark is from anxiety. no." then she said, "that's not what i'm saying––" (even though it *was* what she was saying LOL)

my mother and coworker (who were with me) chimed in, confirming to the NP that i'm not an anxious person; that i was perfectly happy, healthy, active, and involved before this happened; and that something is wrong. to that, the NP said "okay, i can put in a referral to your neurologist." as if i wasn't already scheduled to see him again.. before being discharged, i needed to pee (i have been graced with urinary urgency), so the nurse came to get me––this time without the wheelchair. i just stared at her. did she expect me to hop out of the bed and run now that my MRI was deemed "normal?" she got the wheelchair and took it away after getting me to the restroom. i went pee, and immediately began sobbing. i wasn't expecting to be so devastated by a "normal" MRI result. i was also pissed because of ms. nurse-practitioner's baseless assumption. my nurse knocked on the door and asked if i was okay. sniffling, i said, "yeah." after washing, i dried my hands and she helped me out while tears streamed down my face. right before i got in the room, she lowered her voice and said to me, "it doesn't hurt to get a second opinion. i really hope you get answers."

i really hope so too. that was two months ago.

that nurse-practitioner's notes have followed me around to consequent doctor appointments, so i have to preface all of my new consults with something along the lines of, "just to let you know, i did go to the ED when my legs stopped working and i started losing my vision, which the NP attributed to 'anxiety,' which i was not screened for nor suffer from, other than situationally as that was my first time in an ER and first time getting an IV." sometimes this helps to get them to look past that, sometimes it doesn't. two months later, i am still unwell, my vision is still dark, and now i actually DO have anxiety––not chronically but because i'm not getting better, because doctors aren't listening, and legitimate abnormalities in my lab results, as well as imaging, have been brushed off and deemed "normal." doctors literally tell me (days or weeks after receiving my results online) that everything is normal when the results notify you if they're not, and they have, and they still say it. not once have any of my appointments ended with, "i don't know what's going on with you, but we're going to keep digging, and until we know, here are some things you can do in the meantime to have a slightly better quality of life." so instead, i have to be my own caregiver, doctor, researcher, and advocate. i have to make all the calls (that use up every spoon in me), schedule the appointments, review my test results. i haven't been able to work, drive, cook, or go out of the house. some of my favorite hobbies included dancing and going on long walks. now i can't do those things. i didn't go from doing those things and magically, randomly, out of nowhere, have a 6-month-long anxiety attack that affected my nervous, lymphatic, and hematologic systems. i got sick. i don't know why, i don't know how, i don't know what, but i want more than anything to get back to living. and i'm not anxious. i'm concerned. and the concern is growing because despite all attempts, i'm not getting better. it's not me. it's you. @all the doctors who have ignored, dismissed, and gaslit me when i have very obvious red flags in and on my body. something. is. wrong.

symptoms are signals. even if someone DOES have a mental condition, like depression or anxiety, doesn't mean their physical symptoms can't possibly be from physical causes. and sometimes... crazy thought... sometimes depression and anxiety are, themselves, SYMPTOMS... of PHYSICAL CAUSES.

i am all about mental health awareness and breaking the stigma, i am, and i do believe the mind can have a great effect on the body. but i also think that far too many people, especially women and minorities, have been written off for being "anxious," "dramatic," or "stressed" when they have medical conditions that go beyond the mind. that's not holistic medicine. that's just called being lazy (or too egotistical to admit when you don't know something.) and it's costing us our lives.

When a chronically ill or disabled person gets their lab tests back as “normal” or all clear, we aren’t sad because we WANT to be sick.

We’re sad because we *know* there’s something wrong with us, yet the scans still stay clear.

Before you kill the monster you gotta know its name.

[tj-crochets]

Okay follow up they said the MRI will only take 30 minutes. Is that not how long they normally take?

Hey y'all! Weird question time again! I will be having my first MRI in a few weeks (specifically, an MRI of my brain) and I know nothing about it except No Metal Allowed. I will not be getting the contrast dye on account of I kicked up a fuss about potential anaphylaxis* and the doctor was kind of like "fine but if we find anything and need a clearer picture you'll have to get another one" Do you have any advice/suggestions/things I should know about MRIs? *if, as several doctors have suspected, my weird allergies are MCAS there is a good chance I am severely allergic to the dye. Also I am a bit paranoid about injections in general because my allergic reactions to injections are waaaaaay worse than my reactions to food, pills, or environmental allergies