I was just reading the posts on the Lichen Sclerosis Yahoo Group and I am amazed by the amount of people who speak of this terrible disease. I know I do, but I can talk about anything, anywhere, anytime.
I just want others to be aware that there are many kinds of hidden diseases out there and that if they are suffering then they don't have to be alone.
I have Meniere's Disease, which is an inner ear disorder. I hear a constant ringing in my ears. I remember when I first realized that the crickets I heard couldn't be outside because it was winter. That was an eye opener. I was having trouble with bouts of dizziness and tilting. I have to say the tilting is more prevalent for me. Also, I would be slammed backwards. The nasea I had was credited to the fibromyalgia.
Getting diagnosed was helpful. I was sent for physical therapy, where I learned to control the panic that is generated. Yes, I still get dizzy, but I learned to control the part of my brain that tells me that I need to be concerned when a ceiling fan is turning or a car is coming at me. This was a tremendous help.
I learned to limit my salt intake so that the ringing isn't so intense. No, I haven't gotten rid of it, yet. I am not always aware of it now.
Another thing I learned was not to worry about what is going to happen next. My doctor said that we'll just take one symptom at a time and treat it. This was the best advice I got. I have quit trying to match up my symptoms with diseases. There are so many out similar things out there that it is best to leave the diagnosing up to the doctor.
That being said... Once you have a diagnosis it is best to learn all you can about your disease/illness so that you can be prepared. Also, joining groups that deal with your particular disease is helpful since people who have the diseases are the most up to date on treatments. Doctors have so many things to remember, they are not always up to date on everything. They do research when their patients are diagnosed, just like the patients.