Help me recover from my unidentified rare disease

Hello everyone!

My name is Dora,Im from Hungary.

Well,it is not easy to start...I have never thought I was gonna find myself here asking for help one day but unfortunetely here I am...first I would like to express my gratitude to all of you reading my page. Please share it with the world as I really need a miracle...

My story started 3 years ago. Out of nowhere, something went really wrong inside my skull. I started to have a very loud and weird crunching noise inside my head during every single swallows and it comes with sharp pain. At the beginning I did not pay much attention,I thought it would go away. But it got worse day by day, and very soon this crunching became so loud that can be easily heard by external auditors as well. The pain got also so unbearable that I immediately had to start seeing specialists and taking heavy drugs in order to survive. This was the point where the real misery started...

Although all the doctors heard this unbelievably loud crunching sensations from my skull, it is obviously objective, nobody knows what is this...I have seen countless of ENT doctors, neurologists, oral surgeons, neurosurgeons etc etc...I have had hundreds of tests, MRI-s,CT-s and I had to take several steroids, drugs over the years but nothing helped.

My condition became so bad that slowly I lost everything...my job, my personal relationships,my whole life....due to the heavy pain and the noise inside, I have not been able to sleep more than 4-5hours each night for 3years now,I can not eat, I avoid even drinking because it naturally comes with swallowing...which in my case comes with the pain and crunching. It literally feels like there is a huge bomb exploding inside every single minutes or a knife is stabbed into my brain through my ears... I have been forced to spend appr.80% of my time in bed for 3years now due to the heavy pain and exhaustion.

2years ago at least I found an extremely emphatic and amazing local doctor who has been fighting for me since then...I had several surgeries...spent plenty of time in hospitals since I met him.I had catheter placed inside my inner ears, I got different kind of injections into the inner ear area while trying to manipulate some inner muscles, and so many other procedures...I cannot even go into more details, it is a hell and nightmare what I have been going through but nothing has helped so far.(except of some temporary small relieves which gave me strength to keep going...)

As my rare condition is still not even diagnosed, we searched for help around the world..This was though very challenging due to the nature of my sickness and the Covid lockdowns.

We have finally found a worldfamous inner ear and skull base surgeon in Boston, who is very interested in my case. We have been in contact with him for many months,he is truly amazing, and now there is a chance finally to get to him for a personal visit. He is all my hope now.

On the other hand, as you might know, medical treatments in the USA are extremely expensive and very hard to arrange. As I dont even have a proper diagnosis yet, my first visit would be a very comprehensive examination, including special tests and some minimal-invasive medical treatment attempts.

As I have been unable to work for 3years, I am in a very hard financial situation on top of my sickness... even though my family supported me both financially and mentally as much as they could, this Boston visit is way too expensive for us to cover. Flight tickets, accomodation, medical tests , and possible intervention etc...as a first round I would need appr. 15.000.000 HUF(37.500EUR). I just want to get to him and maybe/hopefully everything will be solved. And as Im not allowed to travel alone due to my condition , I will need an attendant whose costs are also on me.

Every single small amount you could offer for my case, would be a great help or if you can not afford to donate, please share my story among your friends.

Those who know me personally,know what I was like before my sickness...I was a happy and positive girl, with full of life, with great job, friends and family...now Im just a vegetative zombi who barely even exist day by day...but who is still strong and a fighter...I want nothing more in this life, just to finally have a painfree and silent skull like everyone else has...I would be the happiest person on this planet if I could get back my amazing life.And my hope for this lives in Boston...Im begging you, please support me whatever way you can...there are no words to explain how grateful I would be to all of you

If you can not donate here for some reason, here are the account data you can transfer:

Important!Please add as a note : "Donation"

IBAN

HU57 1160 0006 0000 0000 3312 7798

Account

11600006-00000000-33127798

BIC/SWIFT

GIBAHUHBXXX