Diagnosis difficulties

[ladyjedi]

Hi I'm in the UK.. Struggling to get diagnosed... Ibs, dry eye, dry mouth, fatigue, breathless... Mother ra, brother lupus, Aunty sjogren's.. No antibodies.. But gp states not auto immune as all blood tests show fit and well. What can I do next?? Any guidance much appreciated

[Bookblue]

Hi, I have had symptoms for years but didn't link them together. Finally saw a rheumatologist last Nov . After listening to me for 10 mins he said he suspected Sjogren's! He prescribed Etoricoxib to help with joint pain, and advised seeing optician for eye drops. All my blood tests are negative but he said it can take years to show up in the blood. I was relieved to actually get a diagnosis after so long of thinking I was going mad with so much pain in my joints,fatigue, dry eyes. I have just had a follow up and he has changed the way I take the Etoricoxib to try and get more pain relief at night and also something for dry mouth. He also mentioned taking tumeric and rosehip - I haven't tried those yet but do take Apple Cider Vinegar gummies and cod liver oil daily...no idea if they help but I am trying to get off medication if possible. I took Naproxen for years and hated taking such a strong tablet. Try and see a rheumatologist would be my advice. Good luck.

[puffyface]

I don’t think it always shows up in the blood. I read something about a lip biopsy if not showing in bloods to diagnose. But also, he can do a schirmer test for dry eye and LISTEN to your symptoms! Where in the UK are you? You could go privately to a rheumy who specialises in SS? X

[SusieW2]

Welcome to the club! How many times have I heard, "you're healthy" according to the tests? But I felt like crap. I was able to go to a Naturopath who gave me prescriptions for a thyroid medication and testosterone which helps with fatigue, muscle weakness and better sleep. So I recommend just to address your worst symptoms and not focus on diagnoses. For dry eyes, try fish oil/Omega 3, an eyelid wash and warm, damp compresses. Also a diffuser especially at night in cold weather.

[joolee1]

Very similar situation. I'm using eye drops about 4x day in the summer, and 6 or 7x in the winter. I cant' get through the day without them. My throat is gets hoarse by 3 p.m. Difficulty swallowing without water, muscle and joint pain, CREST, fatigue, flaring skin patches, GERD, etc. My rheumy hasn't really addressed Sjogren's. Wants me to talk to eye doc (who has said my eyes aren't that dry) and dermatologist. I suspected an autoimmune disorder 10 years ago and I was correct. My gynecologist finally listened to me and did blood work to confirm. It indicated SS, not Sjogren's, but I don't care. I'm searching for relief from it on my own because I know it doesn't always show in the blood. I won't take meds until I absolutely need to. I watch my diet, rest, yoga. It's frustrating, but know that you're not crazy! This site has been great!

[Megansheart]

It took eight years before my ANA’s and ENA’s became positive, yet I knew I had something which would explain all the symptoms, which beset me within a short space of time.

One rheumatologist diagnosed me with Fibromyalgia (which I didn’t believe) but which at least enabled me to get stronger medications for muscle and bone pain. Another doctor diagnosed Peripheral Neuropathy which enabled me to start Lyrica and so on. So each symptom was addressed enough to make my life bearable even though I didn't really have an official autoimmune diagnosis at that point.

An ophthalmologist later said that based on the level of dry eye and my presenting history that I most probably had Sjögren’s Syndrome yet dry eye (and dry mouth) were not my worst symptoms.

Eventually my pulmonologist whom I was seeing for lung problems said to me “I am seeing an autoimmune picture here”. That did it for me. I went armed to my GP with all the tests I wanted her to order, ANA’s and ENA’s etc. and gave her my rationale as to why I wanted them done. She ordered these tests and within a few days she called me to say she needed to talk. That was in 2015 - eight years after becoming very ill with SjS in 2007.

The argument that we don’t really need a diagnosis seems hollow to me. Would people say that about Lupus Erythematosus (a first cousin of Sjögren’s) or Rheumatoid Arthritis? The great advantage of having a confirmed diagnosis is that you are validated and more likely believed by the medical profession. Doctors don’t then tend to label you as having ‘somatic symptoms/somatoform disorder meaning it’s ‘all in the mind’.

I would encourage you to keep at it. If a diagnosis is important to you, someone mentioned the lip biopsy, which is an option. It is not without some potential risks, which you can research. Again there is a subset of people who show a negative result but (I believe) it is less common to be negative with a lip biopsy than with the blood tests.

Failing that (if you still consider yourself to have SjS or other autoimmune condition), perhaps it would be wise to request having the ANA, ENA and RA panels done every couple of years. Eventually you may seroconvert to positive.

There are some very good medical articles online which talk particularly about seronegative Sjögren’s. Unfortunately many doctors are not aware of the fact that blood tests can be negative when in fact the patient definitely has the condition.