I'm scared, what is this, what if there's nothing they can do?

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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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4 Replies

  • Posted

    Oh, I forgot to add the migraines. I have crippling migraines every other day or so. I have to lay in my room, take ibuprofen and do nothing for upwards of 5 hours. Obviously very annoying.
  • Posted

    l experience some of the symptoms you mention, the pins and needles in neck into arms hands, my hands and feet do go into cramps and  painful spasm at times, and occasionally in neck and abdomen as if twisting and locking,  at times l can get a bit of swelling in my  face neck and recently got a rash or forhead and face one side. l do get frequence and pain soreness at times in bladder but have been diagnosed with i.c, ibs which can cause urgency at times that is the bowel going into spasm typical ibs.l have restless disturbed nights with poor sleep but at other times can virtually fall asleep sat upright holding a drink makes no difference, just go off in a second, more so if warm, 

    Can also wake up feeling chilled with cold, at other times also, then at times overwarm clammy. My concentration is abysmal, and short term memory poor, like loseconds some times,l can be clumsy and balance a bit iffy, the generaly body tiredness with aching common, and that in itself can affect speech,slurry or jumbled, lve a heightened sense of smell, which could be slight rubber burning, along with chemical smells, body odour, cannabis, diesel fumes, envoirament is full of these sort of odours, just some more aware of it. Think l,m of average intelligence, and loved to learn, read a lot observed, now struggle to remember names, and at times feel stupid and clumsy, thought of as a bit eccentric.  So simular symptoms, yours more heightened or advanced or maybe more noticeable and life changing due to you being younger, l,m older and much is put down  to that, it might add to it, but not to the extend it does, to some extend though intollerable often, more tollerable being older than if younger when affect of lifestyle is more drastic sounds like youve been experiencing it for a few years at least, is it getting worse slowly or quickly, these sort of symptoms are going to cause problems with anxiety depression, thats a normal response to it, plus many conditions are affected by central nervous system, so you get shaky at times, thirst, have food cravings, choc etc, or go off food altogether. l and others with simular symptoms also when at their worst feel as if were dying,  Youve already diagnosed conditions what will add to some of symptoms, thyroid, others on mb can explain about that one,

    l dont know what exactly is causing all your symptoms and l hope you get help from neurologist, but can say some of your symptoms are simular to cfs me, fibromyalgia, even the obscure ones like heightened sense of smell. If you look online for extensive symptoms of me cfs fibromylagia you will relate to many of them, but there may be other reasons neurology will show, and even if your appt shows negative or your dismissed, dont despair as many have had that also for years.

    Your so young to have so many problems, but it might help to  read up on me fibromyalgia, there are  also other immune conditions with simular symptoms, all often linked and many have more than one. Its worth reading up symptoms of these conditions but go to neurology with an open mind for other reasons. l hope you get answers and help, best wishes

  • Posted

    I am sorry to hear about your pains and worries.Just to share my story with you,I exprience some of the pains you have.For example numbness,pins and needles,painfull joints in my legs ,arms ,hands and shoulders.they have done MRI  scan.Xrays and blood tests and they can't find anything.I can't use my hands for little things like opening a bottle or tap water without screaming with pain.It worries me day and night thinking what if?I am relying on paracetamol,naproxen and codeine for the pain.So all I can say to you is try and not think about and wait to hear what your Neurologist will have to say. Be positive ,for your dad's sake ,for there are some people in worse pain than ours.
  • Posted

    I had some of your symptoms. MRI and x-rasys didn't show anything and the doctors couldn't do anything about it.

    My brother forced me to go to a chiropractor. The chiropractor found out that I have something called Atlas Subluxation. The joint between my occipital bone and first vertebrae was out of alignment pinching my nerves at the top. After 3 chiropractic sessions all issues were resolved!

    I am not sure if you have the same condition, but it is worth checking it out. I hope it is a simple fix like that for you.


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