Bloodwork came back negative

You do need to increase vitamin D. People with autoimmune condition are "resistant to vitamin D". Google vitamin d resistance in autoimmune conditions and see what comes up. There is a new way to go, and even in the UK people are starting to catch up with what other people in other parts of the world are doing, it is a new protocol, and it works. You are fed up, that may be a good thing.. Don't give up looking for an alternative.

Hi Dave

You are having a very rough go. I wish I had an overall solution for you, but all I have is a vitamin D suggestion.

I am the only person in my large in-person support group who has big problems with D levels to such an extent that 40,000IU weekly doesn't help, doesn't matter if D2 or D3 or when/where/how I get it.

A naturopath suggested that I try Micellized vit. D. It's a liquid and you put the drops in about 4 oz. of water. Swirl it a bit & it's better if the water is chilled. I brought my levels up just on 1 or 2 drops daily, checking only once yearly because that's all my insurance allows. I now take 4 or 5 drops most days as there's evidence our levels should be a lot higher than the definition of clinical sufficiency stateside.

Don't give up. We are always here.

Rose, the bottom line is treating the symptoms. There is no cure tho some experience emissions, partial or total. That doctor was correct in that we must treat & take care of our dry eyes & mouth regardless of diagnosis.

Auto-ruin again! Some experience Remissions! Not touching that emissions topic, lol.

I really don’t agree that there are no treatments or that there is nothing to be gained from having a convincing and recognised name for your symptoms.

Just from a practical perspective, if you live in UK - particularly Scotland or Wales, you get all prescriptions free if you have a proper diagnosis, and this includes eye drops, toothpaste and other topical meds.

Also you can try Hydroxichloraquine - which many find helpful for pain and other symptoms.

Then there is the psychological perspective of knowing what is wrong and feeling believed and taken seriously. 

From the perspective of applying for disability - having a name helps I believe - same with blue badge for parking. 

If you have RA or Lupus or something rare such as Behcets - there are many treatments available to you - so it’s important to distinguish from a medical perspective as you may get a more targeted treatment if you have a related disease that isn’t Sjögren’s. 

Finally there is research. If your condition is formally diagnosed then it affects statistics and research. If people self diagnose on the strength of symptoms alone then the numbers affected will never have accuracy and it is less likely that Sjögren’s will be taken seriously enough. 

I haven’t benefited greatly from having a diagnosis as lip biopsy positive is stil classed as seronegative. But this is because they really don’t yet know enough or have targeted treatments for Sjögren’s and it’s still classed by many doctors as relatively benign and also an orphan disease. Personally I would really like to see this change so we are better served by the medical community. 

I HAVE continued my treatment for dry eyes & dry mouth which I began all on my own prior to even seeing my primary doctor.  The point IS that some doctors are incompetent and you must push for an answer/diagnosis to receive proper treatment.  Requesting referrals to the proper doctors to do just that can result in the appropriate treatment.   Essentially, my doctor was simply content with saying he didn't know the cause and just continue what I was doing as IF I wouldn't considering the discomfort!  Seemed he was even knowledgeable about serum-negative Sjogren's.  Sjogren's takes a multiple-doctor specialty approach. 

Hi tumtum,

I whole-heartedly agree with you... Here in the states doctors give out meds like candy, without fully trying to find & cure the right disease... I have been diagnosed as having Sjogrens, however my lip biopsy was negative (they said due to excessive lip scaring from severe dryness) my blood work at times shows positive for Sjogrens, while other times not but it does show autoimmune disease (s) present, they also feel Lupus may be present but so far not diagnosed... I understand what dave40387 is saying, it is very frustrating when doctors do nothing for you... I stopped seeing my rheumatologist, but I am in the process of looking for another doctor (hopefully I’ll find the right one to help me)... Take care! 😊

Tumtum:

Quote me the line where I said there was nothing to be gained from a DX? Try hard, dearie, put your glasses on and take them off, try it all ways and you STILL won't find that line uttered anywhere by me, aloud or in print, unless I said it before age 12. Why? Because that's when my mother got her DX of an extremely rare condition called spasmodic torticollis. Fast forward another 12 years & I began my own 3 year journey of excruciating pain & agony until I got my endo DX. In both cases I knew the psychological & emotional relief that comes both with having a name for the issue AND with a cessation of the "It's all in your foolish womanly head" routine.

Thus, for at least 50 years, I have known the importance of a DX. As to treatment, I still believe that what's happening is symptom treatment but even if I am wrong, everything I read here & hear in my in-person group proves to me that up to 50% of us can't take any of the current very harsh meds.

I am glad that the UK system covers things like the expensive OTC toothpastes & mouthwashes, etc. The same cannot be said of the situation in the States. If Mr. Orange Coloring from a Bottle is reelected, we'll be lucky to emerge with any health insurance cheaper than $50,000 yearly over here, double that for seniors.

So remember, hon, to put your glasses on & perhaps take a reading comprehension course before you put words in people's mouths again. I'm sure there's more I could ably demolish but I saw no point in reading the rest of your pap.

Again, show me the line where I said that YOU weren't continuing to treat your dry mouth & eyes, Rose. You can't, because I didn't say that. DID. NOT. SAY. IT.

What I said between the lines, but should gave made clearer, was that there are incompetents who would've explicitly told you to lay off any special attention you were giving to eyes and teeth. There are also plenty of folks who would on their own stop taking care of them because of no DX IF the doc didn't say to keep paying special attention to the dry areas.

I am quite familiar with incompetent docs. I lost all my reproductive organs in my mid-20s because of a series of more and more celebrated, renowned gynecological specialists who were so busy trying to prove that I was a DES baby rather than consider my symptoms, despite the fact that in the first 6 months of my 3 year search for DX/treatment journey, my dear brother had tracked down my (dead) mom's retired obgyn and dug up the records that proved that not only was mom never given DES but she had not suffered morning sickness "worth mentioning," to quote the doc's written record of her words. Three years was enough time for the endo to cost me everything reproductive. That was a long time ago. Incompetence continues: my gp is out on maternity leave again. I'm stuck with the Assistant Director of the 20-doc clinic who, in 3 visits, including yesterday, has yet to listen to my lungs even tho he knows I have one extremely serious (& 1 lesser) lung disease, for which he writes 4 daily RXs! How will he ever know what is normal & what unusual for my lungs if he doesn't take a listen? of course there are incompetents out there: my mom died in front of me when I was 17 dye to malpractice by "The Best Neurosurgeon in The South."

Still, I wish you all the best. You might want to join TummyTum in the reading comp class, tho.

Excuse me Aitarg but I really don’t think what I said was “pap”. You really need to allow people space to differ in their opinions you know? 

Here is what you said - and I have read you say this several times: ?6  aitarg35939  rose05770

about 11 hours ago

“Rose, the bottom line is treating the symptoms. There is no cure tho some experience emissions, partial or total. That doctor was correct in that we must treat & take care of our dry eyes & mouth regardless of diagnosis”

The reason I take issue with the idea that Sjögren’s treatment is really only about looking after eyes and mouth is because for many these Sicca symptoms are just the tip of the iceberg. It is a full systemic disease and we need to work on this idea that there are no targeted treatments. I think remission is actually very rare and I think the original  question was about how to get a proper diagnosis so that the awful fatigue is understood and taken seriously. Your comments often suggest that there is no point because it’s just the topical treatments that we need. You only seem able to focus on Sjögren’s as a disease that causes dry eyes and mouth and other parts eg vagina in the case women. The fact is that Sjögren’s is a disease that can significantly increase our risk of non Hodgkins Lynphoma and MS type symptoms and also RA, Lupus, Vasculitis was Scleroderma - all equally serious diseases. 

Re UK - well I think this Patirnt site is used by the NHS and as a UK patient, my point about free or subsidised prescriptions (which we pay large amount of taxes for)  is important for those who are struggling to find a diagnosis. That’s all really. I wasn’t being rude - or saying that topical treatments for dryness aren’t extremely important. Just taking issue (perfectly politely) with you for your statement that the bottom line is treating symptoms. Whereas I think the bottom line is finding the cause of the symptoms so we can treat it at source. That is all. 

Honey child, I allow for differences of opinion. You try to put words in my mouth. I never said that a DX doesn't matter, but you went on the attack as if I had. And tho I didn't say it, both of your posts do just that, i.e., say that TummyTum knows everything and my opinion is worthless.

I'm happy to recommend reading and logic classes, dearie.

I think we just use the English language very differently Aitarg and what you have taken such offence at was just me saying, perfectly normally, that I disagreed with one sentence of yours about treatment of symptoms being what matters most .

From where I come from your language is extremely patronising - but you obviously feel I’m the patronising one so we are clearly never going to understand each other’s way of expressing things.

Anyway I’m sorry as I’ve clearly upset you and this wasn’t my intention. I actually agree with your point that it’s really important to keep using the topical treatments as well as getting a proper diagnosis. 

PS if this person feels their  husband is being ignorant and insensitive about their suffering as they describe - then they need a diagnosis of Sjögren’s, which can only be achieved by blood or lip biopsy.  And after that they need a forum such as this to make it clear that there is much more to their fatigue and joint pain etc  than anything eye drops alone can resolve. Or else a change in husband.  That’s my point.  

Many times a diagnosis is not so clear cut (ie blood or lip test) their are many people, myself included who need other testing & duplicate tastings because the blood work changes (like myself) diagnosing & treating any form of autoimmune disease is difficult & needs different & frequent testing... our mates need to be more informed & update on such diseases, if they were they may be more understanding & sympathetic (my husband is up to date & informed on everything that goes on with me & thus sympathetic to my plight)