Hey all,
I've been lurking on this site for the past week now, and I finally bit the bullet and just joined. The support you provide each other is just amazing; it has given me hope!
Technically, I don't have a diagnosis - like everyone of you, my story is long and complicated. I'm a 20 y/o female from a small town in Canada who has been growing sicker and sicker as the years go by. Almost six years ago, I blew a pupil in my left eye and doctors panicked. I was sent for a ton of tests and my CT showed "something". They sent me for an MRI which came back as "low-lying cerebellum". My doctors waved it off and continued searching for an answer. After a harrowing process, I was diagnosed with the rare disorder of Adie's Tonic pupil even though I don't fit most of the criteria and I didn't respond to pilocarpine drops (which are supposed to constrict the pupil in Adie's patients).
Flash forward to today, and I've been going consistently downhill since then. I do have several other conditions that I've been diagnosed with since then, including Celiac Disease and Polycystic Ovarian Syndrome (PCOS). But each day I suffer from chronic, debilitating fatigue (I need at least 12 hours a day to get out of bed), spontaneous vertigo, dizziness, neck + ear pain and fogginess/lightheadness, like I'm constantly stoned and unable to function. Blurred vision comes and goes, bright lights kill me (understandable in my dilated pupil eye, but not my normal one), vision focus problems and eye floaters. I get this headache a few times a week that is mostly just pressure in the back of my head, and sometimes the pain shoots forward to my temples/eyes. I used to have a photographic memory, but now I've forgotten most of my childhood and I'll even forget the names of my best friends on occasion. I'm an english major and voracious reader that stumbles to find basic words when talking and sometimes stutters because my brain can no longer process the conversation. I've also got hand tremors when doing tasks, muscle spasms and progressing weakness in my left hand/arm. I've started dropping things and being unable to hold objects.
My doctors are convinced I'm crazy and/or it's just because I am obese - so much so, that I am now on a waiting list for gastric bypass out of desperation. Whatever is happening, it's destroying my life. I used to run full scale charity events and horse shows, but I had to drop out of all my activities and volunteer commitments. I used to ride 6x a week and I had to sell my horse. I have a part-time job and work 20 hours a week, but it's becoming harder and harder to go. I need the job to pay for university, which I can now only take part time and I still can't attend classes cause of the exhaustion/symptoms. My friends don't understand - I see them maybe once a week now because all I do is work and sleep. I joke that my boyfriend's name is TV, because I spend more time laying in bed watching tv/sleeping then I do in the real world nowadays.
I was googling and trying to self-doctor about my hand tremors getting worse when an article on MS mentioned the cerebellum. That's when I remembered my MRI from 6 years ago mentioned I had something wrong with the cerebellum and I found an article on Arnold-Chiari. I sat in my basement and cried because I felt like I finally found an answer. Course, I kept reading about the disease and became discouraged, but I'm going to remain hopeful until I have an answer.
Am I right to think that my noted "low-lying cerebellum" are a possible indicator that I have Chiari? Or am I way off base? Should these low-lying cerebellum have been investigated further when it was found 6 years ago? Could my pupil be a part of this?
If you read this entire novel, thank you - it felt good to get that out. I wasn't going to join this site until I had a diagnosis, but I have a doctor's appt on Monday and I want my doctor to order tests to look for Chiari. I'm just not sure what to ask for first. Should I start with a basic head MRI? C-spine? CINE flow study (I'm not sure if they would have that in my small town)?
Any advice or thoughts you guys can provide would be wonderful. You guys are truly amazing people...