By way of Introduction! Long

Hello all,

I am a new member who has only recently been confirmed by a Rheumatologist as probably having Sjögren’s Syndrome.

My story sort of starts back in August 3rd 2007 when I woke one day with a fever and many other symptoms. For a few weeks prior I had been having very weird sensations in my lower legs, like burning and freezing at the same time (it was hard to differentiate). I had also had several episodes of extremely severe gut pain but with no diarrhoea, over the months prior.

The year before (2006) I had a terrible cough that became so bad, (despite several courses of antibiotics), after eight months I fronted up to my emergency department (ED) and was hospitalised for nine days, very ill. At that time I was diagnosed with Mycoplasma Pneumoniae.

In August 2007, some of my symptoms that day were patchy burning symptoms over my trunk, arms and face, difficulty opening my eyes, lack of balance, extreme nausea, fasciculations. I was checked out for Guillian Barrè syndrome but cleared.

I saw a neurologist a few days later and interestingly while reviewing my test results ‘dossier’ recently, I found that she ordered all the tests for Sjögren’s (among many others) but they were negative at that time.

So the run around started. Neurologists, Rheumatologists, and when they were ‘unhelpful’ (to be kind) I went to a couple of other doctors who were less mainstream. They were more useful at that point.

I was diagnosed with Fibromyalgia so I settled for that as an explanation for my 24/7 pain, stiffness, neuropathy, fasciculations etc, etc.

Late in 2008 I developed dreadful nausea again, early satiety, vomiting and was soon after diagnosed with severe gastroparesis and oesophageal dysmotility after having a Gastric Emptying Scintigraphy test and Oesophageal Manometry. Thus began six years of liquid diet (soups, pureed foods). Then the cough came back. I was again hospitalised and subsequently diagnosed with Bronchiectasis in both lungs.

Each of these ‘diagnoses’ meant that I received treatment for the individual problems but there was no overall under-one-umbrella diagnosis. I knew there had to be a larger issue causing all of these symptoms collectively.

By 2010 I was on Lyrica (Pregabalin) for the neuropathy, Tramadol for 24/7 pain, Domperidone (Motilium) for the GI issues and Propranolol for the postural tachycardia and orthostatic problems. These all helped and are still helping.

In 2011 one of my more alternative docs suggested I see a Opthalmologist because I had told him I was having peeling skin and blisters in my mouth. The upshot of the Opthalmologists appointment was I had a Schirmers test done with 1mm of tears in L eye and 2 mm in R eye. He concurred with the referring doctor that I probably did have Sjögren’s. However nothing more was done about it. No-one retested my ANA’s or ENA’s.

Fast forward to this year 2016. My Pulmonologist said “I’m seeing an autoimmune picture here in your results”. That did it. I went to my new GP and asked for tests for Sjögren’s. She of course wanted to know why. I told her the story.

The upshot was my ANA’s were 1:1,240. Anti Ro’s positive. So have just had my first visit to the Rheumatologist. She was guarded about labelling me yet. She also ordered many tests. However I have heard via another specialist I see that she believes my symptoms are probably Sjögren’s related.

Next visit is in a couple of weeks time. So then I will hopefully know more.

Sorry this is so long however this odyssey has been long - close to nine years now!


Sorry to hear that it's taken you so long to have all these things put together... Hope that your rheumy is a good one and hopefully she'll be able to work out a treatment plan for you. There are a lot of members here with multiple AI diseases, and having someone 'join all the dots' is a common complaint. Past discussions might be useful for you to find out more about the stomach or lung problems- they're searchable by topic.

Keep us informed how you get on!

Why do we have to go to so many doctors to be diagnosed!? All docs need to be educated about autoimmune diseases. I wasn't diagnose until 53, while I had symptoms when I was 25 and just married. I had lupus since I was a kid and was branded the family hypochondriac.

You got to be strong.

Link to a list of autoimmune diseases.

Thank you Jules for your response.

I too hope that this Rheumatologist is a good one. Characteristically over this past nine years I have found that these specialist doctors (Neurologists, Rheumatologists etc) seem very good on the first visit. However when they can’t find anything on the battery of tests THEY perform, they are very dismissive on the second visit…and there is no third visit!!!

So…having had one significantly raised ANA (at last) I am more than hoping, paradoxically, that the tests she did are also raised. This way I might get some targeted treatment management. We will see!

Apart from just recently developing some relatively mild Psoriasis, at this point I do not have any other autoimmune diseases. I do have an adrenal gland condition but that is congenital and not AI.

USAgurl…I completely agree. What’s so hard about it really? I think when one is seronegative despite symptoms seeming to point in a certain direction, it must derail a doctors thinking to some extent. This seems to happen a lot in autoimmune conditions. However the other problem is they often don’t test for the right things. I know there are many thousands of tests they can do for all sorts of rare conditions and it’s probably not easy choosing. It is the fact they seem to ‘give up’ after having a few negative test results returned for their patient. We as the patients shouldn’t have to do the thinking for them.

I feel like you a bit that I have always been looked upon as a bit of a hypochondriac, especially by my mother. She has never said it but it’s what I feel she thinks. I have had a number of health issues since I was born so possibly that’s my body just ‘complaining’ under the load of small aberrations OR the fact that one then develops an autoimmune condition sometime in life, may indicate an underlying propensity for niggling symptoms in the prodrome.

All interesting stuff!

What a shame that you have been through so much, and forced to question yourself like this.

I have been lucky enough to have been sent to a rheumatologist who is willing to diagnose on the basis of clinical symptoms and does not require the supporting blood work. She is well aware that a person can be seronegative and be diagnosed.