Post Edited (Mommyof121) : 11/23/2009 2:29:05 PM (GMT-7)
Me, too, me, too. Welcome to my symptoms. My drs are great about treating me, but I often have the sense they are skeptical about how sick I say I am. The old.."butyoudon'tlooksick" philosophy really makes me mad, why, my cheeks are so nice and pink, so..... healthy looking! Have you had seen a neurologist? I did and was glad my rheumy made me go.
It sure sounds like you are in a flare of nerve inflammation, I have felt just the way you describe. Since I am still trying to stay gainfully employed, the brain fog scares me the most, and the more tireder I get, the worser my symptoms . And your doc knows that autoimmune diseases aren't ever diagnosed, or ruled out based on one "normal" lab test. I hope your neurologist puts the picture together for you. And tell him to do every blood test in the book, literally. And take notes about your symptoms and write down your concerns, so you will be prepared for your few minutes of time with the specialist. I was falling about 3 times a week until I started prednisone. My scarey headaches are only rt. sided, but my left side would get numb and my left foot wouldn't pick up so I would trip, now I just stumble like someone with a drinking problem
Take care and keep us posted,
ps. I live near Buffalo and Merry Christmas! EH!
A positive ANA is just one clue in the big lupus puzzle and every dr. who deals with Autoimmune Illness, knows that and that ana titres come and then go, Plus: a. lupus is the great imitator b. it is a dx. of rule everything out first.... and c. they don't know what else to call it! My dr. commented that well, my ana was only "low positive" when he first repeated it and I said... Your point? Since he still writes lupus on all my lab requisitions, I don't think it really mattered. And I was frankly, too sick to care! I have bone density scans every year because prednisone is linked to osteoporosis, and I take calcium with d every day. My recent Vitamin D level was only 30, (anything below 39 is considered low) so I was told to take at least 1200IUs every day, double what I was taking. I bought the gummy vitamin d's that have 1000IUs per gummy, and I giggle that it is a fun way to take a pill after I swallow the 8 meds I take twice a day. I was diagnosed with Antiphospholipid Antibody Syndrome, (APA) back around 1995), so I had a headstart when I needed to go back to a rheumy for a diagnosis beyond that. Keep reading these postings, and scan back through the old threads, you will learn so much and see that what you are going through, is nothing but what way, way, too many of us went through for a diagnosis, or non diagnosis or ____________fill in the blank. I handed my dr. a timeline of my illness from the first stillborn baby, and infection, two pages that I narrowed down from 10 and he said..... after reading in front of me.... What do you want me to say? You have lupus. So I really was one of the lucky ones (I've always thought it helped that I was a nurse and had worked with my drs), who didn't have to think I was LOSING MY MIND for too long once I started getting ataxic and falling. I had to go through the ... Sue, are you depressed? You aren't depressed?? Let's give you some paxil just to be sure......Are you SURE you aren't depressed. It must be menopause. Ok... am I falling because I am depressed or am I depressed because I am falling???? Ok, dr. (my GYN), since when is falling a symptom of menopause????? No, a clue, I don't get a period anymore........sue.... these antibody levels aren't normal... you need to see a rheumatologist. Hmmmnnnn, I had already seen one 10 years previously, so I went back. Looking back, I am really grateful I had the sense to document anything, and ask for copies of everything. Hope you feel better soon,
I know what you mean about your head racing. I get so swamped in anxiety, and I feel like my nerves are screaming, too. I have a 6 week pattern of symptoms, and my head racing happens when my b/p is up, and my ankles are swelling. I get so sick of being sick, and when I am not so sick, I try hard to appreciate it. Trying...trying.... Happy New Year,