Why can't I get a diagnosis of Sjorgrens?

Sorry to hear your story - sadly this is all too common - it's exactly what has happened to me and I belong to several SS grouos and hear the same story word for word hundreds of times especially in the UK. All rheumatologists should be sacked and replaced with immunologists trained in auto immune diseases generally.

Hypothyroid (hashimotos) is an auto immune disease and often accompanies SS. There is no such thing as sicca syndrome it is a name used by rheums who refuse to accept SS usually because one is sero negative to the only pathetic tests they have - about 50% of all SS sufferers are sero negative!!! You are not alone there are at least 1/2 million of us in the UK but yes it is isolating as no one other than another sufferer understands and most medics are useless and unempathetic.

Try being male with SS and being told you can't have it your male - it's an old woman's disease!

I do know what I'm talking about my quals are BSc biology and Phd medical science and sero neg Sjogrens

hi Candy, my symptons are nothing compared to yours but rheumatlogist told me that burning tongue was not related to SS (I tested positive in blood test). The ENT prescibed a multi vit B complex (B6, B12 etc) as apparently lack of vit B gives a burning mouth (I also have GERD and Barretts ..so not sure what is causin my burning tongue and throat and ear problems) . I took the hydroxychoroquine for 5 months and stopped it coz got fed of taking 6/7 tablets 3x daily(at that stage I had just been diagnosed with Barretts , SS,  Pityriasis Roscea and osteoporosis )  diagnosed . My symptons are starting to return after 6 months absence but dont think it i will resume with the plaquenil.

I am also sitting with my hands in my hair with this! The doctors: its Fibro, youre depressed, try exercising. 

I used to be a trainer, I cried if I had to skip a day of training, I couldnt even sit still long enough to watch a movie, now a walk to the shop or going to the mall is pure torture, nevermind exercising. 

Blood tests positive for Sjogrens, low score, saliva jaw scan shows that its flowing a bit slow, and I have every type of ache and pain and fatigue and list goes on, neuropathy, gerd, tonsil stones etc. Also found lesions on a brain scan. Tested negative for MS. And the Rheumo says take it easy lets check it again next year?!? So dont worry about the stinging pains in my head, probably nothing, like the lesions and the rest, its all probably nothing and Fibro and depression. I mean come on, I have never been depressed, but it is undertandable that I am now, I cant train, enjoy a night out, everything is just going down hill and I am only 32. 

Seeing a specialist physician tomorrow, hopefully he can find something or shed some light on this issue. 

Woooza, thank you for the vent session. Hope you find and answer soon and good luck. 

I know this is an old post but only just read it. I was so put off by my rheumatologist's offhand attitude, I joined the BSSA here in the UK. I rang them and asked for names of consultants in my area of NW England that they knew specialied in SS. I want to see her privately and then was able to transfer to her NHS list. It was worth it. I have confidence in her even if the dire straits of the NHS means my annual check is six months behind. BUT I am able, should I wish, to go as see her privately again. Don't know if this helps you, but possibly it might

First, Candy, I'm sorry you're having such a hard time getting yourself taken seriously.  If your opthamologist tested you and it came back positive, show the report to your general dr.  I'm guessing, though, he/she read the report. 

I can totally understand how frustrated you are.  I'm still, after 10 yrs or more, dealing with problems.  I mean, I do have a cornea specialist that confirmed me as having Sjogrens and I've had many of the symptoms you've stated.  Can you get another general doctor and start fresh?  That's what I had to do.  My opthamologist said he'd rather I see this one dr he knew and I said, well I live close to one of the top hospitals in the country and they just opened Kelloggs Eye Center and all they do there is research, eye care from a to z.  So, he finally said okay...like it's a choice on his part lol.  Oh, that hydrox you're on is one I  was on when dx'd with sarcoidosis and it was to help with inflammation.  

Don't give up!  The doctors are just now coming to grips with this disease.  It's been around for years but seemingly they didn't teach that part of the anatomy   I guess being a member of this site gives us more insight on what we are suffering from therefore, we think the drs should automatically know about it.  Some do but most don't...at least from my experience.  Keep trying to see a new general dr and show them the report from your opth...and perhaps after they contact that dr, they will give you a referral.  Referrals stink!!  

Anyway, I wish you well and hope you get what you're looking for very soon!

Thankful,

Frustrated

I do have SS - confirmed. I had mouth ulcers for 18 months and found that tomatoes caused it. Too much acidity. I now know that I cannot take anything hot as in heat, spicy or even too dry (e.g.bread crusts). Sometimes even small crumbs from nuts or rice granules don'tgo down and I can cough so hard that my arms and ribs hurt. The only quick fix is my ventolin inhaler which relaxes the throat muscles. I have Hylo bottles in the kitche, lounge, handbag and in the car. That's because I have a bad habit of waiting too long before applying them so as to relieve the symptoms. That's how I am trining myself to cope. One ray of hope is that SS was a major discussion at a big Rheumatology conference in the UK just recenty. Hopefully it will become more recognised. 

Try to be pro-active and pat yourself on the back for each achievement, no matter how small. You are not alone.