NEED TO GET A DOC THAT KNOWS, THE ONES I GO TO KEEP SAYING AUTOIMMUNE BUT NOT LUPUS. IM STARTING TO THINK SARCOIDOSIS. I HAVE SCARS ON MY LEGS SO BAD I CANT WEAR SHORTS, AND I HAVE TO HAVE MAKE UP TO COVER MY FACE BEFORE I GO ANYWHERE, TIRED ALOT. DIZZINESS, BACK PAIN, LOTS OF THINGS, JUST GETTING TIRED OF IT, ALMOST BAD DEPRESSION AGAIN..ANXIETY.. TOO.
Ben's Friends has recently put up a doctor directory service. You can take a look at http://doctors.bensfriends.org/
Regards,
Red Lawhern, Ph.D.
Resident Research Analyst, Living With TN
Hang in There. I have been in your shoes. It took me several years for a diagnosis. I went to KU Med (5 Drs each different specialties), Rheumatologist in Lincoln, NE Pain (migraine)& Rheumatologist in Omaha, NE, Found a perfect Dr in Hutchison Kansas & after 1 appt, which went great - she said she was taking leave to do clinical research & write a book. When she returns she will add me to her rotation. Let's Hope. She however stayed in touch with my primary care physician. With her help & the persistence of my primary physician I am not sure how much longer i could have went on without a diagnosis because it was getting where I couldn't afford (financially or physically or mentally) to go to another specialist. I had my whole health spiel down pat (some listened some didn't). Anyway - one of last appointments I was a hot mess. While waiting in lobby for my appointment a few teen girls & one of their moms were staring at me, talking about me & laughing at me. I was in full flare, miserable, lovely red mask, patches of hair gone, ulcers on my arms & face & I felt hideous. My turn for appt. I was in tears - my GP (also our family doctor) was concerned & explained situation. he sat back & said ...You are lucky you are even here. That got my attention. He said when all of this first started -your second hospital admission... we put you on comfort measures & code list -we didn't think you were going to make it. He then said after that night he was going to do as much as he could, research, talk with specialists, etc to get to the bottom of this. We had our ups & downs but I am so thankful for my primary doctor.
If you happen to have a good primary physician or any doctor ask them if they can help you figure out what it is besides an "auto immune" disorder. It wouldn't hurt. Lupus as with many other auto immune disorders are tricky to diagnose. You can have false positives, false negatives, blood work that is border line-but not enough to diagnose.
I would keep a notebook with a calender. Keep notes of symptoms, strange things (rashes, headache, pain all over, being exhausted all the time, etc) & dates. What you can do or can't do when you are at your worse & times when you feel somewhat better. Also - if you have a question or concern - write it down for next appt. Ask around for recommendation of good doctors or check out Ben's Friends Doctor Directory. Sorry to ramble- just letting you know that you will get there unfortunately it takes time. Just try & keep any records, notes, calender, pictures, etc to assist you and the physician . BEST WISHES!!!