Diagnosis?

[peachtreepiggy]

How do you get rheumatologists to take you seriously? I am almost convinced I have Sjogrens, but after seeing threee rheumys, they say no, because all my blood tests have come up negative. But I still have the dry mouth, which is progressively getting worse, I have salivary issues, dry eyes and body aches. Now after covid in Sept 2023, I have developed atrial fibrillations which I never had and I also had a painful UTI, which morphed into interstititial cystitis, also known as painful bladder syndrome. I have heard that you can still have sjogrens despite negative blood tests. Any advice and /or input?????????? I am in the USA.

[Catpuss66]

30% of symptomatic sjogrens are seronegative usually lip biopsy is required for diagnosis, however a few rheumatologist's willtreat you if seronegative . Best find support from FB group specific for US.

[Heritage1961]

Start eating and drinking foods which give give relief to you symptonsIf not keep them at bay.

With your eyes salt water flush is very soothing. Chlorsig Gel will kill any infection., use single sterile drops only when neccessary to flush.

remember to wash face/eyes thoroughly after drops as eyes can and will get irrritated by residue.

I also use that hand gel all overmy face when I find my mouth or eyes are playing up this is a very effective antibacterial option.

Fresh Honey, tumeric & ginger drinks help your whole body...note I only use rainwater as schemme water gave me cadmium/copper poisining. i also cook in rainwater, Scheme water effects my Kidneys/and my glands in general. I got bought up on a farm sohave learnt the effects.

I am 29 years with Sjogrens but have had to basics sice I was a kid ot diiagosed but confirmed later.

I recetly saw a ew Rheumatoligist in Perth of which I was somewhat horrifies about as Doctors are very scathing and minimising about Sjogrens in Australia if you wont take the debilitating drugs ad remedies (psych eval?? /dementia/powerof attorney?) of their choice from which you do not recover and other issues are more debilitatig than what you already have...for the long term,

I had ever felt so tythreatened i all my life. I had my eldest son come in for protection and followed up with other femal doctors who did ot want to help as I would not take steroids etc and I wouldnt allow them to fix me?...LOL! Sjogrens cant be fixed or go away. They did agree I did not have Demetia!!~ My so agreed o more Doctors that hide obvious test results and contribute to rapid further harm to onself.

The Specialist was not impressed with the Doctors referral which provided no history apart from the fact I had Sjogrens & Fybromyalgia....so I had to provide a brief summarised outline which did not go far it covering issues of the past 29 years not recorded electronically or on paper...just the drugs & injections??? (nothing about the side effects)

The Specialist agreed with my natural treatment , exercise, essential research and also agreed that all the drugs have been know to impair rather than cure or help as drug causes harm to other parts of your body. (vicious cycle) Self Management has been recommended to me by varying Specialists who have actually cared enough to list and acknowledge the harmful side effects of the drugs on the gut and other essential organs, respiratory and circulatory,,,,,, not to forget the one they never told you about in the first place...neuropathy!

He informed me if it got too much??? that I could come back ad see him aytime . First appt $475. LOL. My arms now have the worst continual neurophy pain plus itchy ulcerated sores of my scalp with encompasses severe fast migraines and pulsing serve pain all over,,,with highly excelerated BP ( I am currently using hair options to relief this), Ashwaganda, Managanese, Iodine & Eye Health Tablets with Lutien/Bilberry combo brings down the BP...minimses the migraine....elevates breathing capacity.

I endeavour to not use any tablets unless essential.

Collagen supports skin and pain...so okay for continual use.

Believe in yourself, Take Care!

[honeybug]

Hi peachtreepiggy 😊🌿🌸🦋

I have Sjogrens Sicca…like you I’ve seen many doctors before finally getting diagnosed via a lip biopsy.

My Sjogrens progressed to the point I had difficulty with:

swallowing talking my salivary glands had sealed closed per my dentist lung issues and the biggest one was at age 50 I couldn’t produce tears. Whenever I was moved to tears produced none but experienced the worst pain in my tear ducts.

It eventually worsened to the point I had to start taking brand name Evoxac 1capsule every twelve hours…it forces my cells to make moisture. Makes a world of difference.

I have so many health diagnoses that I’m not believed when I reveal this.

I started taking detailed notes of my symptoms and when they occurred and how long they lasted. Keeping medical journal for a few months like this as well as what you’ve used over the counter/ prescription meds and the results will be written proof of your problem journey.

I was using a gel and oral spray prescribed by my dentist to aid with producing oral moisture but it blocked my thyroid meds absorption. It’s called Biotene it helps prevent dental cavities due to no protective naturally produced saliva.

You should discuss this with your dentist so he can confirm that you have dry mouth and your vision doctor for dry eyes. If they both write letters of their confirmation with your findings and show the Rheumatologist these letters upon your visit with her/him all of this documentation will aid in helping your Rheumatologist to agree to lip biopsy. Sounds scary but not. Mine was a small amount of skin removed from inner lower lip. The mouth heals very quickly using Biotene aids.

Many times when we have autoimmune diseases our test results will return negative but the condition still exists just at a level too low to show positive results.

I just said a prayer for you and wish you much success in your diagnostic journey.

Much love and prayers.

EJ/Honeybug I first started out in this forum years ago but switched to Fibromyalgia instead) 😊♥️🥰🙏🕊🌿🌸🦋

[Roopavati]

Hi there peachtreepiggy

I'm sorry for your distress. Keep trying for a dr that looks beyond those tests to get a diagnosis.

In my experience one ends up managing the symptoms that one has by a variety of lifestyle changes. Not always easy.

For my difficult symptoms I was referred to a specialist for treatment - eg heart specialist, gynecologist. However my sjogrens diagnosis wasn't a point of interest to either one of them.

At the moment I don't see the rheumatologist but I'm happy for the diagnosis as it's a way of understanding my ever changing and increasing symptoms.

The other thing I find helpful is reading about the syndrome on sites like this. It decrease my stress levels knowing that there are others to validate the things I am experiencing.

Best of luck with your management

Roopavati

[kushami36]

I would suggest joining a Facebook support group for Sjögren’s that is as local to you as possible, and looking for specialists who are near you. Some groups keep a list of recommended specialists that you can download.

[LindyK]

Absolutely you can have Sjogren’s without positive antibodies (seronegative Sjogren’s) or positive lip biopsy. I have not found a rheumatologist that is half competent on Sjogren’s and have given up. I also have interstitial cystitis as well as classical clinical symptoms of Sjogren’s. IC and Sjogren’s are associated with one another.