Sorry this is kind of long, but I'm desperate to hear from someone who might be able to give me some advice.
I've had varied and worsening symptoms for years now. The dry eyes, nose and lips with eyelash loss situation got me to the eye doc a couple of weeks ago who blood tested me for sjogrens. At the time he said he'd do the lip biopsy if the blood came back negative. I've heard of 2 people recently who got a non conclusive report from the lip biopsy and it sounds painful, so I'm not sure if I want to do it. I must say tho, that sjogrens sounds like the answer to all of my symptoms! I've been undiagnosed for the last 12 years, maybe longer and I'm extremely frustrated, angry, and worried that if it is sjogrens, my organs have been damaged. Is this possible if my CBC comes back year after year looking relatively healthy?
I've been in joint pain, and muscle pain, and exhaustion (came on after a 'brutal' extraction of an infected root canal in 2003), and on and off extreme stiff necks, what my doctor told me were chronic 'shingles' in my sciatic nerve along with extreme sciatica for 12 years, carpal tunnel syndrome since 1980, chronic sinus infections for 10 years with antibiotics the whole time, digestive problems - dx with candida in 1988 and leaky gut in 2003 by an expensive naturopath and a homeopath, I've become 'chemically and mold sensitive' in the past 3 years. I've seen accupuncturists and a myriad of alopathic specialists. Ran all kinds of tests, ultrasounds, MRIs, xrays, ct scans. Had surgery to remove a ganglion cyst that had displaced my wrist bone so badly I had to have a bone graft the 'size of a walnut' to replace the missing bone. Who knows how long that thing lived in my wrist bone! Have been on specials diets, eating organic as much as possible, trying to use 'clean' hygiene and cleaing products as much as possible, taken all the appropriate supplements, juice fasting, enemas, colonics, and everything I can do to 'detox' myself. Nothing gets me better and I just keep getting worse. The brain is not working right these days - really off in so many ways. I'm full of anger and frustration.
All of this seems to be related to years of unsuspected toxic mold exposure in a long term rental. It didn't smell but I lived above a really nasty wet basement with no insulation. When it did finally start to smell the landlord said she would 'fix the problem'. And she just dragged her feet for 3 years, while I hung in there 'coz I didn't want to move out of my home of 25 years - I loved it there, altho now I wish I'd never lived there! I finally got the building inspector in there and he forced the landlord to 'remediate'. She threw me out for costing her so much money, and the 10 years of sinus infections stopped about 1 1/2 months later. But when I lived there, the symptoms just spiraled downward for 25 years and since I didn't smell anything, who knew? At this point, it really seems that either the mold or the subsequent 'yeast/candida' in my body 'triggered' an autoimmune disease which seems to be genetic, possibly. My dad and granny had similar symptoms.
Does this sound familiar to anyone - can anyone help me? I really need a dx and my pcp, as helpful as she is, doesn't seem to know enuf about these illnesses to know what tests to order. My BUN/creatinine levels have been elevated since 2001, but she doesn't seem to think that's a problem (even tho my Dad suffered with 'nephritis' - 4 months in bed in the 1960s). She's tested me for 'inflammatory' illness, but the bloods keep coming back 'negative'. I worked for a chiropractic and was extremely health conscious when the symptoms began to become debilitating in 1997, so to have gotten this sick when I've been living healthier than anyone I know in attempts to stay healthy just doesn't make sense.
Thank you sooooooooo much!