undiagnosed

[TeeDee63]

hello,

I’m struggling with what I believe to be Sjogrens symptoms. I have a particularly dry mouth

( noted by doctor) who was looking at the ulcers in my mouth. Due to having been diagnosed with lichens sclerosis ( AI) Alopecia (AI) and recently hypothyroidism ( antibodies negative for hashimotos?) doctor conducted ANA blood test which came back negative so she says I definitely don’t have Sjogrens. My symptoms have stayed, my eyes particularly worsening with pain from dry eyes, making it difficult to drive and see in general. Is it true that because I have a negative ANA result I can’t possibly have Sjogrens?

Any help will be appreciated. Many thanks,

Txxx

[butterflyEi]

I am not up on this enough to be much help but I recently heard a specialist say that drinking sparkling water instead of ordinary water helps with dry mouth.

I see you posted a while back and no one seems to have been able to help so I wonder if you have looked at any of the self help groups on facebook.

You have been diagnosed with other auto immune disorders so it is not unreasonable to think that the test needs to be done again (IMO).

I have dry eyes and use eye drops and an eye bag that pops in the microwave (found it on Amazon). I think a warm damp flannel laid across the eyes can be soothing as well.

sorry not to be able to help more. hope you get sorted.

[LindyK]

I don’t think it’s true, but many rheumys won’t diagnose Sjogren’s unless Sjogren’s antibodies are positive. My Sjogren’s antibodies are negative, but I have all the classic symptoms of Sjogren’s (terribly dry eyes, all 4 of my tear ducts of each eye are cauterized, terribly dry mouth, and parotid glands that occasionally swell and get sore). My ANA score was positive 1:320, speckled pattern. ANA scores aren’t considered diagnostic tests and can point to a lot of things. Rheumy states I possibly have seronegative Sjogren’s…won’t confirm diagnosis because she says her industry standards won’t allow it. I’ve heard of rheumotogists making the diagnosis without positive Sjogren’s antibodies; a good number of us is seronegative. I also have hashimoto’s and interstitial cystitis (IC). There are many studies that discuss the association between Sjogren’s and IC but my rheumy denies there’s a connection. I’m going to make a sweeping generalization and say (IMO) that Sjogren’s is understudied, and rheumatologists are not always as knowledgeable about Sjogren’s as they are RA and some of the other inflammatory conditions that affect joints.

[Tessica in reply to LindyK]

I am in a very similar position to you and feel that Rheumy Depts are ignoring us due to their long lists 👍

[SusieW2 in reply to LindyK]

Me, too but my rheumatologist disgnosed me anyway. Since there are few actual medicines to treat Sjogren's and some other diseases, a diagnosis doesn't mean much. I try to focus on which symptoms are most problematic and find ways to deal with them For dry eyes, besides saline drops and warm compresses, I also use a diffuser at night during the months when the heater is running. Generally more humid environments make my eyes more happy. Avoid drafts especially from air conditioners. Into the diffuser I put essential oils designed to deal with my post nasel drip as well as the dryness. I've also tried alkaline water and tonice water with some minor improvements, I think. An anti-inflammatory is so important with inflammation related conditions. I take fish oil and turmeric. But consult with your Doc first.

Good luck on this journey.

[Cas70]

Hi TeeDee - I was told so many times that my “bloods” were ok - BUT finally diagnosed with Sjogren’s and Lupus. Get in touch with British Sjogren Syndrome Association 0121 478 1133

Mon-Weds 9.30-4 and 9.30 - 8 on Thursday and Friday

They are all sufferers, they are kind and helpful.

I wouldn’t take no for an answer, under the Patient Charter you can request a second and third opinion, I would ask to go to a Centre of Excellence like Guys and St Thomas’s

Just a tip - sugar free mints to suck. Lots of water and add chopped apple or lemon or cucumber. Eat cucumber and melon all watery foods help. Go to an opticians and they will recommend over the counter eye drops for now.

Phew, I get so angry about how we have to push for everything. Good luck. Cas

[Tessica in reply to Cas70]

Hi there when you say go to Guys or St Thomas do you mean through NHS? Even if you dont live local? Many thanks

[Cas70 in reply to Tessica]

yes - under the Patients Charter we have the right to ask for a referral to any NHS Hospital especially a specialist one like Guys and St Thomas’s, your GP can’t say no. They should do it there and then, as it is your right. I have had 8 years of battling with doctors who think I’m speaking Martian. As have hundreds of us, possibly thousands. Go for it, let me know how you get on. Ps look on this website as they have a list of hospitals who deal with autoimmune. There are very few in the South East where I live - look up Elizabeth Price top woman in this field, it may lead you to a hospital closer to you. X

[TeeDee63 in reply to Cas70]

Hi there, I did have a look at Elizabeth Price and have been offered a telephone consultation next week. The cost is £200. I will also write a new post regarding this so won’t repeat myself here. Thanks for everyone’s input.

T x

[ATVMWF]

HI TeeDee63,

I have been diagnosed with Sjogrens and am ANA negative but anti-LA positive. The doctors can arrange for several tests to check if you have Sjogrens IE: Schirmers eye test, blood tests for anti-RO and anti-LA, lip biopsy and saliography.

to relieve the discomfort in your eyes ask your GP to refer to eye consultant, or prescribe some if the following eye drops. Clinitas, Celluvisc, Hylo Night.

As you already have thyroid issues it is certainly possible you have another autoimmune disease, they tend to be like buses, come together.

Sjogrens is not an easy diagnosis to get. Most sufferers have to go back and forth to their doctors with symptoms for years before it is eventually recognised and even then the treatment is patchy, at best. We are overlooked and generally ignored by Rheumatology.

Good luck.