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Hi. I'm 17 years old and since middle school I've been dealing with weird symptoms. I was misdiagnosed with interstitial cystitis when I started high school, but I'm fairly certain that now it's part of the other mess I'm dealing with. I basically started experiencing horrific pain constantly, all the time, similar to how I'm told a UTI or kidney stone feels. I had to quit my job recently because of how often this one symptom affects me.
My first neurology appointment is in 4 days...I'm getting incredibly antsy. I had full-body MRIs done but don't know if anything was seen yet.
I have these preexisting conditions:
- Hashimoto's disease (thyroid, autoimmune)
- chronic urticaria (autoimmune, I was initially misdiagnosed with dermatographia)
- major depressive disorder
- Hypermobility syndrome (very mild and has never bothered me)
- anxiety and social anxiety (i'm autistic so mental health problems are frequent.)
These are my primary symptoms
- Weakness, numbness, tingling in legs/arms. Sometimes my hands or face swell up very badly
- The bladder pain and incontinence
- Can't always control bowels (It happened at school a few times...very humilating.)
- Pain...like a tired pain, all over my body, always.
- Fatigue. I sleep for sometimes as long as 20 hours. The other day I slept 26ish. I fall asleep as soon as I'm warm--including in the car on a sunny day. Some days though I'll go 40 hours without sleep.
- Dizzy, clumsiness. I used to be pretty graceful and I wouldn't fall, but now I trip and fall over everything. My balance is just gone.
- Cognitive dysfunction...this has ruined my life. I had to drop out of college because of it and now I'm $2,000 in debt and about to ruin my credit score forever... I couldn't understand anything my teacher was telling me. I could listen, take notes and not remember a word of it. it's gotten worse since then.
- Can't answer basic questions, I forget where I am or what I was doing. My speech is messed up. Sometimes I'll mix words in a sentence up or just stop talking in the middle of a sentence with no recollection of a conversation. Sometimes hours will pass and I'll barely notice. Memory in general is terrible.
Weird other symptoms
I know the little stuff can give stuff away sometimes, so I thought I'd post what I had from my health journal :P
- I get super cold after I eat, like freezing, I have to bundle up. Mostly if it's a big meal.
- Can't read very well. I can write alright, but I can't read paragraphs whatsoever...I miss reading a lot.
- I may have had multiple partial seizures recently. I have been smelling burnt rubber and smoke a lot, and once I did feel every muscle in my body spasming. It was incredibly painful. (I've had many spasming muscles in my neck which was, before this, the worst pain I had ever felt.)
I still follow the IC diet for whatever reason, which means no acid at all. These actually do still make it a little worse sometimes, but not always--I have no issues with soda, but a sip of lemonade will send me into pain for days.
My mom had rheumatoid arthiritis, psoriasis and raynauds, but I have no joint pain or anything so I think the only thing I got from her was the auto immune disease itself.
I'm just scared. What if it's something very bad? What if I'm told I only have a few months left to live? My whole life will have been a waste...I didn't get to accomplish my dream, so there's no reason to even bother with those few months..
What if they don't know? What if they look at me and say they have no idea, or worse yet, dismiss it? There's no way I can work with the way I am now. I can't even use the bathroom properly.
I feel stupid now. I used to be smarter. I skipped two years, I had amazing grades, I loved to learn and become more knowledgeable...now I forget what month it is and can't answer what 2+2 is. I forgot a majority of my vocabulary.
I'm scared I'll die before my dad...I don't want to leave him alone. I don't want him to face that burden. I'm scared that if they can't fix me that when I do die, it'll be alone. How could I ever ask someone to love this?
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