Greetings Everyone !!!
I am so happy to have found this support group I just cried.
I would like to share my symptoms and see if anyone out there shares the same. I keep on being brushed off my physicians and just feel like a fish outside of water all the time.
I am 37 years old and got diagnosed with Situs Inversus at age 2. I know I had many sinuses infections as a child with constant post nasal drainage (and really bad breath despite dental hygiene OCD). In the military, I got diagnosed with Sports Induced Asthma, go figure.
I have been relatively "healthy" up until about two years ago. I began by feeling quite dizzy and lightheaded very often with several headaches a day. I then began having more and more respiratory infections. Then the neck pain followed and headaches were so constant with the ongoing lightheadedness. I went in for a brain MRI, I was petrified of having a tumor or something since I was a single mum of 3 (one adopted).
By chance I got referred to a pulmonologist who talked to me about PCD for the very first time and then they sent me to the NIH for further examination (I live in the US). So far we have confirmed bronchiectasis and waiting to see if I also have PCD (Dr is quite positive I do).
Anywho, I now have a SERVICE DOG because of the lightheadedness that occurs without warning, especially when I make sudden movements. So bending over to pick up anything causes me to loose balance and fall, or walk into walls, door frames, you name it.
I feel EXHAUSTED all the time. As if I just wanted to sleep for ever, yet sometimes, despite feeling very tired, I feel as if I had just had a gallon of dark coffee and I feel shaky.
I feel as if my vision were to be affected too and my ears DO ANY OF YOU HEAR RINGING ? all the time and as if someone were jabbing an ice peak in them. Then when driving and going through slight hills I feel as if I were taking off on a plane.
So, in sum, the thing I suffer from the most are headaches, lightheadedness and dizziness with nausea, ringing in ear with ear pressure and, according to my husband, hearing loss, shakiness, cough attacks, and BACK PAIN. LOADS AND LOADS OF MASSIVE BACK PAIN !!!!
Thank you all for being there. I feel less alone and less crazy.