Posted 7/13/2008 5:38 PM (GMT -6)
Hi all. I frequent some of the other forums here, but thought I would check into this one too. This could get long...please bare with me. Some history...
My mother has lupus anticoagulant. It took years and years for her to be diagnosed. She's had numerous strokes, seizures, and also cancer so she has quite a few health problems. Keep in mind she's only in her early 50s.
Anyway I've been far from healthy my whole life. Mystery illnesses and rashes. Lots of hair loss. Bad reactions to a lot of medications. My finger tips and toes turn purple in cold. Lots of joint problems, mainly dislocating joints...mostly knees, but also lots of pain. From age 8 to about 24 I had a very good family doc. He would pay attention to all my symptoms and really look for answers. Once my mom found out she had a form of lupus my doc, because of my symptoms and now family history, thought it would be best to test for the disease. Also my aunt, another patient of his was diagnosed with MS. At the time, years ago, he didn't seem to find anything, but said that it would be best to test every now and then since lupus doesn't always show up. Is this true?
After a while I was diagnosed with hashimoto's. Just been taking synthroid to treat it.
Now I've been having even more problems and because of insurance issues I had to switch docs. This new doc is unbelievable. I mean she has no answers for anything and never wants to investigate. Right now I'm being tested for possible crohns disease. Here's a list of my symptoms from a post I made on the crohns forum.
Symptoms I have are
diarrhea anywhere from 5-10 or even more times a day and this has been going on for years, maybe four or five years to be exact...just recently got worse. I very, very rarely have a regular bowel movement or just one or two a day.
rectal bleeding with and sometimes without a bowel movement. this has also been going on for years. in the past it's only been like a few drops of blood in the toilet or some when I wiped, but this past month it has gotten pretty extreme to the point where I couldn't even see through the toilet water multiple times.
severe lower back pain...this one just started with the severe bleeding
mouth sores that my family doc can't explain or diagnose...I've seen her multiple times over the past 2 years for this
a mysterious rash that comes and goes, but doesn't spread if I itch it and again the family doc can't figure out where it's coming from or why. when I asked her to investigate though she said and I quote..."don't go looking for trouble"! it's mostly on my stomach.
multiple blood tests have come back with high white blood cell counts which I've been told means there's inflammation somewhere in my body. where in my body that is my family doctor AGAIN has no idea...do we sense a pattern here?
I think that's about it. I have joint pain, but blame that on being overweight, maybe it has something to do with this also...I don't know.
She never put anything together, obviously with the "don't go looking for trouble" responses and an ER doc is who recommended me to see a GI doc because he thought maybe it was crohns or some form of colitis. On July 31st I have my first colonoscopy. I sense this is going to be a long process.
Where am I going with this...I'm wondering if I should be rechecked for the lupus. I guess I need to know the answer to one of my earlier questions first...is it possible for lupus not to show up in blood work sometimes? I'm trying to get back in to see the old doctor I had that cared...I have insurance he takes again...but he's not taking new patients. He might be in Sept though.
I see an endocrinologist for the thyroid problems and PCOS, a gyn regularly for the PCOS, my crappy family doc, and now a GI doc. I want to stop seeing the endocrinologist though because all he does is push diabetes drugs at me, which make me really sick...stopped taking them a couple of years ago. This was supposedly one of the causes of my constant diarrhea, but even after I stopped the meds I still had the diarrhea and now it's even worse! I don't have diabetes and don't want the meds for them! He says it's a precautionary thing. He's mainly pushing metformin and byetta in case you were wondering.
So as you can see I have quite a few health problems and I don't know where to go for answers. I came here, to the lupus section, because I know a lot of you have experience with some of these other disorders too. Also I hear once you have an autoimmune disease it's more likely you'll have more than one. Should I be looking into other specialists? I'm really lost and miserable from all my symptoms...I can do much of anything anymore because I'm always so sick. I'm desperate and really appreciate if you guys made it through this post. Any advice, support, answers greatly appreciated.
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, and in the process of being diagnosed with crohns. Too many meds to list!