I have so many of the symptoms for Sjogrens disease yet my blood work comes back neg. for it and all auto-immune disorders. My neuro said the blood results don't mean much and left me hanging. You know how its after you leave the office that you think of all those important questions!
I don't want to have sjorgens but when I look at the symptom list I have a lot of them.
So can anyone here can tell me how they got their diagnosis?.
Another day of extreme fatigue for me, family was visiting from out of town and I just couldn't go to the outdoor concert tonight with everybody. I was sure the heat would finish me off as I already barely had the energy to get through today.

I would get an apt with an endocronolgist. I have a lot of the symptoms too but when I went they didn't feel I had it and many of my issues are a "fluke" and in combo would make me think I have it. Have you had your blood work repeated lately too? I ask because mine changes so much from time to time so I always suggest people ask if they can have repeats.Also what about fibromyalgia?The severe tired goes with that. Hang in there

Yes my blood work has been done recently and sent to Mayo. My neuro trained in PN at Mayo and she is the one who said the blood work being neg, doesn't mean much . I then wondered about the people on the forum who have Sjogrens and how they were diagnosis. Apparently it can take a very long time to show up on blood panel. As said I don't want it but I do have dry eyes, nose, skin and neuropathy of unknown etiology. I do not have symptoms of fibro or arthritis but positive for small fiber.

Hi. I am not saying my doc were accurate though I have seen so many but I have severe dry eye and dry skin,mouth,nose. They still don't think I have it. Not to say you don't or who knows may be they are all wrong with me. My eyes after 25 apts this year is still dry eye/bleph,my skin is seborreic dermitis,the mouth etc no clue. I seem to have a lot of "flukes" in my life and health. The only thing I can think of is to make an apt with an endo and may be other specialties to see if it something seperate or connected. Hang in there

Silverlady will likely chime in on the Sjogren's diagnosis. It is complex, as is the disease. I have the diagnosis, and it was confirmed by minor labial salivary gland biopsy. The word minor, is kind of misleading, as it is not minor....the gland is minor, however the procedure is actually more daunting than I expected. It is do-able, tho, expect some soreness and swelling and I had a black and blue chin for 3 weeks. Mayo read my slide and it was consistent with Sjogrens due to inflammation. I would be very unhappy if they told me I had to undergo that again, as well as manometry (an esophagus test)....no where near as bad as manometry, but up there on my less favorite things to have done in my spare time. It is basically an oral surgery.

Blood work is also a mainstay of the diagnosis, with the biopsy, it is usually included in the rheum. panels that are done, however, there is a seronegative form, in that many positive salivary gland patients, do not have positive SS-A or SS-B, however, often there are other odd things that show up off and on over time, such as high ANAs which end up not correlated to the Sjogrens (when they should be). That correlating of the salivary finding with blood has been an issue in my case for 9 years believe it or not. Now, apparently, it is considered definitely Sjogrens. (At least for now, at this point in time, that could change depending on the doctor) Sorry, but my frustration with rheumatology is showing.

Other things will be tests for tear function, such as the Schirmer's test. I know I flunked the eye tests, for a while I had punctal plugs, now I have restasis....my plugs fell out, as my nasolacrimal glands got extremely enlarged, so enlarged that one actually sucked air and was musical---since the restasis, it has shrunk, and the eye doc told me they are no longer doing the punctal plugs at his clinic. Eventually, they said they will make eye drops from my serum.

I also have esophageal motility issues, which are causing significant problems, neuropathy (small fiber via skin biopsy) which I don't need to tell any one about, myopathy (neurogenic) via biopsy, oncholysis....which amounts to a lot of symptoms in a few categories.

I can honestly tell you if your blood doesn't come back positive on the Sjogren's panel, even with the gold standard of minor salivary gland being positive, you still take flack from many rheumatologists on the diagnosis. Many will outright tell you, that you do not have the disease, fair or not. This is a huge dispute in rheumatology, which also pulls in neurology, which has patients with seronegative Sjogrens with neuropathy.

Oh and the big thing is to make sure you are not on any meds that are in anyway anticholinergic, as are many pain relievers and antidepressants....they don't like to do some of the procedures such as eye and salivary tests if you are on meds that can in the least bit cause dryness. Amitriptyline like drugs...the tricyclics all cause pretty bad dryness.

I guess what I am trying to say, is, it isn't as clear cut as it should be. If your rheum panel is negative, it will be difficult to get the biopsy, but you may find some one willing to do it...and it may show something. That still may leave you with controversy in your life....controversy that can last a decade! I honestly don't know what to tell you. I has been a long hard row to hoe for me, and I am still not done with the controversy and arguing between departments and docs.....hopefully soon, I will get some clarity.

Hope you find answers. Not having them is frustrating.

This is an excellent site for expaining some fo the tests that diagnose Sjogren's, http://www.rheumatology.org/public/f...ogrens_new.asp

But sometimes Sjjogren's doesn't fit into the textbook categories. I had the dreaded mouth biopsy here in Texas but Mayo refused to accept it. So I had it done again there. It was difficult to cope with but it was done correctly and healed pretty well in about a weeks time. At least enough not to bother me.

I'm sero negative and it is affecting my nervous system. I will likely have to go to IVIG soon. I'm scheduled for a checkup with my neuro soon.

Mayo diagnosed me with small fiber and axonal neuropathy from Sjogren's Syndrome. I also have the dry eyes, nose, mouth and lots of digestive problems.

I wish you luck with your testing.
Billye

Thanks everyone, I think I'll skip the biospy. I did have the eye test and it was positive but I was taking lots of meds that are anti-chologenic(sp) so not a valid test.

Thanks Silverlady for your input. I never like to discuss other people's conditions as a third party, so I was hesitant to start a discussion about what she has gone thru, but she knows a lot about Sjogren's....and was the force pushing me to continue harping on my biopsy, which was finally what has gotten me to this point....with the diagnosis of Sjogren's and probably additional autoimmune disease.

Three weeks is about right....I got over the worst of the biopsy in 3 weeks....but as I said, to make it valid, make sure you are off all anticholinergics...and even some drugs that are not usual anticholinergics can produce dryness. Get off those first. They do not want to repeat the test.

I had numbness in the area of the biopsy pretty badly for about 5 years. It is fine, as it isn't in an area where it matters. I still have a slight bit of numbness there.

I tell you this only because, diagnosis needs to be done correctly, and I hate to see any one go thru pain and suffering and have it not be useful.

Silverlady and I have very similar issues, and her experiences have helped me in my journey. I was about to give up and just say they don't know what this is, it is hereditary or something they can not figure out, and it appears that they feel it is autoimmune now, and I am hoping for a second shot at IVIG if I am lucky. Apparently there is a shortage?? and the price has gone up??? Don't know the truth to this, but, regardless, I would like a second shot at it...it has been many years and I wish they had not stopped it for steroids.

Well, good luck to you. Diagnosis can take years and can change over and over. It is frustrating, even when tests start coming back positive all over the place.

Hi Silverlady

I think we have the same thing.
I am 29 year old male. I was diagnosed with hyperthyroidism 14 months ago which resolved in two months w/o medications. a couple of months later I started having numbness and tingling in my shins, thighs and buttocks (both legs) and I have burning pain in my right shoulder and arm. in the past year, the numbness/tingling has evolved to a burning/freezing pain in same areas. I also have dry eyes (right eye worse), dry nostrils (right nostril worse) and dry throat. I also had body wide twitching for several months (started with left eyelid twitching a year ago that persisted for three months 24/7 and progressed to body wide twitches- now I have occasional twitches only).
All of my symptoms started after I had a middle ear infection. I used CiproDex ear drop for a month ( doctor had prescribed for 5 days only). At the beginning I thought I have had bad reaction to Cipro but now I think I have non-length dependent small fiber neuropathy secondary to Sjogren's Syndrome.
I am RF, ANA, SS-A, SS-B, ESR, CRP negative. Brain MRI normal. I have very brisk reflexes especially knee and ankle (symmetric) with 3 clonus. I had an evoked potential test done a few days ago (SEP) and the person who did the test told me my right leg was not normal.
Can I have all these because of Sjogren's and not have elevated ESR or any of the antibodies? I know 30% of Sjogren's patients are seronegative but I thought only mild and uncomplicated cases are seronegative?
My pain is a constant 6/10 and some days it becomes 8/10 aching buring freezing pain. I read your post and I felt you might be able to help me find some answers. I am going to ask the rheumatologist (who thinks it's all in my head) to do a lip biopsy. I will also ask my GP to test me for Lyme. Please help me. Thanks.

Many of the people with 'seronegative Sjogren's' are in fact, suffering from small fiber neuropathy, which will cause Sicca, and most of the symptoms of
Sjogren's.