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Old 11-15-2012, 09:25 AM   #1
Junior Member
Join Date: Jan 2011
Location: Boston, MA USA
Posts: 13
pg600rr HB User
debating to have lip biopsy... need advice, story and labs inside

I am scheduled to have a Lip Biopsy done @ Tufts in Boston in a few weeks and I am trying to decide if its really needed.

Heres my background:
29 y/o male, started feeling ill w/ whole host of symptoms in Feb. 12' (but was having episodes of not feeling well starting in August 11'). Since Feb. have been in and out of hospitals in Boston, seen 28+ specialists in various areas, and prob had a $250k workup so far. My PCP is in the process of sending me to the Mayo clinic.

Not a whole lot has been found via the testing. Lyme tests have come back borderline, autonomic testing reveals "mild" POTS, early on blood work revealed 8% atypical lymphocyctes, and a skin biopsy revealed evidence of non-length dependent small fiber neuropathy (although a more recent one refuted this with contrary results), vit D has been a little low, and homocycteine has beenn high, Alk Phosphatase a little low, as is CK level. Other than that I have stacks of "normal" lab and testing results.

Because I have complained of dry mouth and dry eyes, and I have fatigue and GI issues as some of my major symptoms, my most recent Rhuem has explored the idea of Sjogrens. Here are the related Sjogrens tests I have had (all totally negative):

ANA (x5 in the past year, negative)
ANCA negative
ESR (usually 1-3, highest its been is 5)
CRP usually 0.1-0.3
DSDna negative
SM ab negative
SCL-70 ab negative
SS-A & SS-B (x3 in past year all negative)
RNP ab negative
RF ab <11 range 0-15

Regarding the dry eyes/mouth... I did have Lasik done 2 years ago and have had dry eyes since, hard to tell if they are worse or the same now because I dont recall how bad they were 3 years ago. My dry mouth seems to be worse at night while trying to sleep and in the a.m., I read this is common with Sjogrens, but I also can only breath through my mouth when I sleep (I have a deviated septum and for some reason my sinuses get completley blocked when I go to bed)....

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