I had gone to ask my doctor her advice about my right eyelid drooping, but she was not there and the nurse told me I needed to get to the ER. I have been having recurring symptoms for the past two years. There were was no rhyme or reason for the symptoms.
I ended up in an ER in Gainesville, FL. The first ER I went to in Lake City said they would do some tests and to see my primary in one or two days. They did nothing, nor did they give me anything even though it was apparent I was seriously ill. My sister-in-law is a paramedic and we went home and called her. She said it was up to me, but she would go to the ER right then.
They knew I was sick and had signs of a stroke but they could not figure out what it was. They could see that something was wrong, so they admitted me and I ended up staying for four or five days.
I was released but still no one knew what it was -- just that something was wrong. I was referred to a hematologist, neurologist and ENT.
The first visit was to the hematologist. They took eight vials of blood then did a bone marrow biopsy and after asking us more questions they took another 16 vials of blood. He wanted to hear about all the symptoms because it might mean something without me realizing it.
The neurologist was not interested in listening to me or letting me explain about the symptoms. She was very rude and did not let me talk about these symptoms because they were not part of why I was seeing her, in her opinion. She did some testing on my hands and feet. I asked her about my eyelid drooping.
She asked me what I was more interested in fixing, my hands/wrists or my eye. She knew I was ticked off and I have told their office I am not interested in being seen by this doctor again, so now they have made it difficult, by saying I have to start over even though these doctors are in the same office. The doc who referred me to them was not surprised the woman doctor was like this and said something.
Anyway, even though she did not indicate a follow up nor did she do the referral for surgery she stated was needed, I had to find out that some of the lab work indicated I needed to be seen by a rheumatologist, but since I don’t want to see another doctor they are trying to make me start all over.
I have since found out I do have severe sleep apnea and I also have to see an infectious disease consultant due to me having chronic Q Fever which can and has caused issues throughout my body.
I was told I could not infect people, but that this is a rare disease, even more so as it is more common among veterinarians or people who work with animals, which I do not. All it can take is to breathe in one bacterium and it will replicate. Why it was and is so hard to detect is that it goes in and hides in the cells.
One of the ways it is treated is that I have to take antibiotics for 18 months to two years or longer. I also have to find out what damage it has already done to my body.
I am also at risk of having a stroke due to this disease even though I am only 40 and other than my white blood cells being elevated, all my physicals have been great.