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1137639 tn?1287855801

Sjogrens blood came back negative - I need a dx!

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!
2 Responses
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1176211 tn?1264038680
Lots of the same symptoms.  SLE and Sjogrens. But, then I read about Atypical Grave's disease.  they all have similar problems and such.  But, Grave's is very often associated with an insect bite (which I had years ago).

It is great when you have a doctor that keeps trying to help you and get the right dx and treament.  It is good that you have him behind you.  My rheumy does not like my neuro (I have bilateral and diffuse white matter/lesions in brain) neuro says SLE, rheumy puts both SLE and Sjogrens in the mix.  I take prednisone sparingly as it can hurt other organs is overused, he said.  My dermy dx Grave's.  Atypical Grave's has similar symptoms, but involves weight gain, not loss (woe is me!)

I also have a 4x4x5 nodule on my thyroid and the number is hypothyroidism, but after weeks of meds, it still has not budged. I gained 45 pounds in 6 weeks.  Still fighting it but I am hanging onto 140 (I lost 35 lbs to date)  It is so much easier to excercise without those 35 lbs.  

Best to you and hope you get on the right track soon, do not give up and if a doctor does not support you there are others doctors that are wonderful. Your family doctor sounds great!

Carly

Anyway, hang in there and I hope you

The meds/treatment for each immune related diseases vary so very much
Helpful - 0
1063463 tn?1302274619
Hey there!  I am in the same position as you are but my doctor is very knowledgeable about AI and has ordered many tests.  There are a few of mine that have cam back elevated ESR (sed rate) ans my testosterone is post menepausal (SP.)(I am 34).  With that being said I can tell yuo that from what she has told me...AI is very hard to dx and sometimes we never get one.  My doctor is willing to try treatment without a specific dx and I am grateful for that,although. it scares me a little too.  I refused to take high levels of Prednisone back in december but she is wanting me to do this.  I am going back to my rheumatologist in order to get that medicine and I will go from there.  I really do wish you the best but if you do not get answers right away do not give up.  I would ask your doctor for an ANA, ESR, RF FACTOR, Lyme Disease, and specific antibody testing for thyroid.  I hope I helped  you a little!  Take care! OH one more thing..did they do a lip biopsy?  
Helpful - 0
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