Identical Twins with Sjogren's

Hi, Sha,

The test that probably came back is the ANA test--it can both be positive and negative but also have ratios indicating potential severity (it is NEVER conclusive alone, though, never!); you likewise probably showed inflammatory responses in your bloodwork--extremely high white blood cell production without active infections, an "RA" factor, and general inflammation tests are part of the megacocktail. Some genetic sequencing is studied now but not definitive.

Definitive blood tests for Sjogren's simply do not exist; the ANA also tests for lupus and other autoimmune conditions, which are DIFFICULT to understand let alone diagnose. The proper tests for Sjogren's include Schirmer's test and a lower lip biopsy--having dry eyes and mouth can come from anything from allergies to medication reactions to hormonal imbalances to, yes indeed, Sjogren's. To diagnose you in a single visit from blood work?? DO see the rheumatologist: in Seattle, go for Scott Pollock (Minor and James Medical) or Natalia Tishkevich (Group Health or Polyclinic, am blanking on which she went to)... Those are two good--and aggressive in the right ways, conservative in the others-- ones in a Sea(ttle) of mediocrity.

Incidentally, you say "hydros" for pain--as in hydromorphone? What is the pain medicine for exactly? That isn't prescribed at random for just pain without a definite cause, and knowing that lets forum members know what else can contribute. That certainly dries up many bits of many bodies. That isn't to say you do NOT have SS, but thrush is not the usual symptom to lead to diagnosis (thrush most often happens when female hormones--from natural cycles--get the natural bacteria balance knocked out of whack, which is why they are so often a recurring thing); the things that start are eyes and mouth feeling full of sand--painfully dry, chronic conjunctivitis only helped by steroids until a permanent regime to combat inflammation occurs, mouth so dry it hurts/gums feel on fire for many/swallowing becomes difficult because the throat is not moist, and often gastrointestinal discomfort--primarily heartburn and extreme sensitivity to spicy and acidic foods--along with joint pain in some and flaky skin in progressed stages...

It is certainly critical to have her checked head to toe... If she is going into Seattle with you, can I make a huge suggestion for her diabetes?? Go see Matthew Davies, period. Nationwide one of only five endocrinologists I would trust with my life. He is amazing and will check EVERY hormonal and related level (pre- and regular albumin, calcium, estrogen, cortisol/aldosterone, the works... And he KNOWS WHAT EVERYTHING MEANS COMBINED--most truly just look to have a patient in these convenient boxes... He will see if ratios are correct, etc)... You can't assume that a positive ANA means anything in reality--it often turns into nothing and is checked as a fluke or a particular practitioner's newly discovered pet disease. NO GENERAL PRACTITIONER IS QUALIFIED TO DIAGNOSE SJOGREN'S, PERIOD. So please see the rheumatologist yes... Have the sister, who is apparently far worse for wear with the diabetes (it honestly CAN and often DOES cause every single Sjogren's symptom and more--it is frustrating because it is SO difficult to manage and live with, but it is complex and hits everything-that insulin/glucose malidy is a building block for all vital functions that crumbled)...

So send her to Dr Davies (he is on Madison Ave in a building called the Nordstrom Tower). Both should--assuming you have standard non-group-health coop insurance--get into the rheumy division with Pollock... Again a good doc in an even worse sea of cruddy ones. WA state physicians overall are honestly some of the worst I know--less research backgrounds, mediocre schooling, low continuing education requiremets comparitively... You have to really seek out the ones who do it on their own for their own growth and excellence, and I can count them on my hand in WA; the east coast and LA&San Fran--RESEARCH HUBS--those are good competitive markets. The people who graduate at UW honestly would never make it at UNC or UofIllinois Chicago or in Philly or DC or UCLA... Find non-huskies in general and try to see those (their same-department colleagues are... Mediocre overall... Sadly)

So the test didn't say you HAVE Sjogren's. Once they measure tear output and check out your mouth from a rheumy point of view, check for the other hundred Sjogren-like conditions, and see if hormones may be to blame, then--and yes it usually takes years--then you can be sure... Like ALS (Lou Gehrig's), it is a process of elimination followed by a best guess. Arthritises at least show clear bone changes; SS is peculiar and varies widely. Dry mouth can come from almost anything and is a side effect of all but two drugs--Salagen and Evoxac that specifically treat dry mouth.

As for genetics, it is already rare, but AI diseases do tend to--though often not the same flavor because USUALLY they are triggered (most often by bacterial infectins that make the body later attack normal bacteria or by environmental factors like exposure to toxins... Even GMO foods are considered a major threat to immune response, as is hormonally altered milk... Long subjects but again it is complex)...

Good luck and first and foremost keep an open mind and don't be convinced because saying you have Sjogren's... From bloodwork and a dry mouth? Irresponsible of any GP. Trust the rheumy for rheumy conditions. Many insurance companies won't even allow GPs to be PAID for testing what they are in no way qualified to interpret. That is shameful in this profession. Still, not totally useless but fear absolutely would be--again, so many are + on tests with NO clinical symptoms... It just means your blood has a diagnostic factor linked in about 40% of SS patients... And of all +ANA patients, only about a fifth get a SS Dx--so take the other 3xs as many untested that are estimated to have the factors show positive, and you are looking at a couple percent of ANAers being "Sjoggies" as many call themselves...

Good luck, and don't fret... Twins pose interesting possibilities, but obviously they do not get identical exposure to environmental and food/medicine/other triggers that ultimately shape our adult bodies. Your genes started the same (mutations can occur anywhere); you came from one egg... You look alike as a result. It never means you will have the same end result health. If only it were so reliable... Try to calm her as much as possible and just let her get a referral from the GP... Skip another costly appointment (costly to SOMEONE even if on disability)... The rheumatologist and endocrinologist will both want to see you both... Yes, guinea pigs in a way, but for reasons that help you both... To see the distinctions more than the likenesses.

What symptoms do you deal with DAILY? That is a more crucial question than what caused thrush which has too many "can't-knows" like hormonal changes the weeks prior or diet or the kidneys getting infected also throwing off the system...

If you took antibiotics, btw, thrush often follows. Sugary foods, dairy heavy diets, any soy consumption (it is linked with hundreds of conditions but lobbyists make it legal and even propogate that it is healthy--bollocks!)... TOO many who knows why options with thrush and even the infections... But be careful as the infections can make your immune system retaliate if they don't get controlled/if they recur (kidney infections aren't directly linked to autoimmune issues like Sjogren's--I would almost guess the kidney infection would lead to the rest, not the rest lead to the infection; thrush CAN happen in SS--usually from steroid use though!--but yeah, wouldn't be my first route to explore. Seems she likely has a vested interest in it specifically unless she is secretly House MD--a fictional character because NO dr js like that!)

I have rambled far too much... The Sjogren's Syndrome Foundation has tons of info, and if and when you DO get a diagnosis, their handbook is an excellent resource and worth its $10... Be patient and never trust such a fast "you got this" unless it is a positive/negative/no false positive option test like an STD one. Right now, you have symptoms. They may or may not mean much. Same with the twin. She has a history and symptoms. Diabetes that isn't managed by the treatments used really does hurt everywhere and screw with EVERY gland, and Sjogren's attacks glands. Calm the fear but seek the answers. Just know that it can be "no answer" for years until something definitive makes specified treatment a necessity. There are MIXED and UNSPECIFIED connective tissue diagnoses because of how they do change and progress or go into remission rather randomly. Again, best of luck. I hope those doctors can fit you in. They are worth a wait. Skip UW--it is the worst university hospital I have encountered in all of the USA. That says a lot. Stay away--they are really only good for a select few genetic conditions and none are autoimmune (the flakiest profs/clinicians I have worked with; scattered, don't listen well with a few exceptions that have no openings, forget to followup or follow THROUGH with their part of it, and forget who has what and keep bad charts that no one can decipher including them... Take it from someone who knows the area's medical offerings!)