I saw the rhuematologist two weeks ago. When I was at the The Chiari Institute, they advised that I find out why my auto-immune markers were elevated. So, I just got in to see him. When I was admitted to the hospital, last April, I had a fever and a rash (along with many other symptoms). Lately, that rash has come back and especially if I am in the sun. I also have the classic "butterfly" rash of lupus across my nose and cheek bones and painless sores in my mouth. My fatigue has also been out of control. It is the one thing that has not improved, at all, since surgery! So this morning I was anxious, scared, excited for some sort of answer and some sort of treatment plan. When I saw the rhuematologist two weeks ago, he took nearly an hour with me and reviewed all of my medical records. It was nice to have a dr that actually knew what Ehlers-Danlos syndrome and Chiari was. I chaulk that up to him being a fairly new doctor but it was still very exciting! So my labs actually were improved over the last time but were still elevated. I have all of the outward symptoms of lupus but he "does not want to label me as having lupus yet." Bottom line, no answers...I am just $40 poorer and a little frustrated.
Weston stayed home sick with me today. He has been crying in pain from his ear. But, he also has a sore throat, runny nose, nausea, and headache. When I took him to the doctor, they called it a "screaming" ear infection and tosilitis. They did not even bother to swab it for strep since he has to take antibiotics for his double ear infection. I have set him up with endless popsicles, ice cream, and Gatorade. That alone made him feel a little better. On top of that we are alternating the tylenol and motrin to control the pain until the antibiotics start to work. The doctor also had a medical student. The doctor remembered us from the strep-throat incident before last. At that time, I was using a walker and getting ready to go in for surgery. She asked how everything went. I told her that I was feeling a lot better. Then I mentioned that I had been diagnosed Ehlers-danlos syndrome. She wants to send him to a geneticist. So she wrote a referal to see one. We will find out if Weston has EDS. Now, do I want to know? That is the question....
