Well hello everyone! I am totally new to all this so excuse me if I say anything wrong or something.
My symptoms started about 3 years ago when I was 16. Woke up with a water like fullness feeling in my right ear and hyperacusis out of nowhere it was a normal summer break. That lasted about 2 3 weeks and then subsided I guess on its own, I used some ear drops and some stuff but I think it resolved on its own…from that moment that day I lost some hearing and have been having EAR issues ever since. ALL types if symptoms with my ears you name it I had it (ringing, deafness, fullness, hyperacusis, weird sensations etc). So I just accepted that like “Oh okay I have ear problems and I’l live with that somehow…” of coruse I was wrong. After about 6 months so late 2019 I started having some balance issues drunk like feeling disorientation and all that equilibrium shit. Again from that random day when I felt that I have been having problems with balance ever since to this day. Then covid happened and in all that mess a year went by with no new issues from what I can remember (2020 feels like I slept through it). Fast forward 2022 came, I started having some autoimmune like symptoms like MAJOR LIKE BIG TIME fatigue like never before and a really WEIRD but SCARY symptom that came in November OUT OF NOWHERE one night is HOT RED EARS. So to sum up everything (I dont wanna bother you with my whole wide story to read) right now I have developed or gained a pretty high number of symptoms which are mainly neurological…here is a list
- Ear problems (ringing on/off, hyperacusis, deafness, fullness, pimples always around ears earlobes etc.)
- Balance/equilibrium/vertigo issues ALWAYS
- RED HOT EARS
- PRESSURE around my head I dont even know how to describe it
- Brain fog on off
- A hard lump behind my jaw/ear that showed up randomly…(thought it was lymphoma…)
So I think thats it. Or at least what I can remember at this exact moment. Apart from that of course I have been to TONS of doctors, neurologists, all kinds of ENTs, did MRIs scans all that…like many I read they always said you’re all good healthy and tried to tell me its psychosomatic…which I KNOW its not because all my life I’ve been a active normal person and out of nowhere started having these neurological issues. I am at a really difficult spot right now and have been. Contemplating suicide EVERY SINGLE DAY. Through these 3 years I thought at first it may be Menieres then it may be Thyroid problems such as hashimoto then something else then Relapsing Polychondritis (red hot ears) which is probably the scariest things I came across during all this time I tried to diagnose myself, then I thought it may be MS so you get it. Its really frustrating living like this EVERY DAY suffering. AS A F***** 19 YEAR OLD. I am from Croatia, healthcare here is shit…they have absoultely no money for any possible travel for me to see some US or some other doctors and treatments tests whatever. Now I dont even know what and why I tried to write in this post and whats the point of it but I guess these are the questions I want an answer to if possible.
- How much does the surgery cost at Dr Hepworth, Hackman, Annino and Cognetti? I read that these are the big four the best. (including staying and everything) and can I even be treated in US as a European citizen (EU)?
- Does this group allow fundraising since thats my only option to do anything basically thats why Im asking the first q, my hands are tied and am REALLY close to ending this shit
- I dont know how but if you are willing to help me in any way contact me please and yeah…
I know I should do the scans first and all that but I just currently dont have the money and thats it.
- To summarise everything I just wanna know if this is it? Do I just have to accept this whats happening to me everyday and hope for a miracle or something because I just dont see any way out of this and the worst is YET to come.
Edit: Oh yeah I forgot to add that I have issues with TMJ and all that crooked teeth and jaw…Also I read a lot about Upper Cervical Care and even DTR therapy functional neurology medicine all that just so you know haha one day I’ll try those maybe…