Is this Sjögrens?

[Megansheart]

Ok. Where do I start?

I am a believer in having a definitive diagnosis made (where possible) when one is unwell, as I feel it is the only way the medical fraternity tend to take one seriously......so...

....my saga starts in about 2007. Third of August 2007 I became very unwell. From there I had numerous symptoms. Fasciculations (muscle twitches) about 30,000 per day (resolved after about two years). Electric shock sensations in muscles. Neuropathic pain in legs (burning/freezing) and other patchy weird numb sensations. Difficulty swallowing.....later diagnosed on manometry as oesophageal dysmotility. Severe early satiety and vomiting later diagnosed on scintigraphy as Gastroparesis (severe). Constipation as part of the GI dysmotility. Balance problems where I would tip sideways. Orthostatic intolerance and postural tachycardia. These symptoms, I believe, fit under the banner of autonomic and peripheral nervous system involvement.

Then there was muscle pain and stiffness...myalgias (not resolved). Overwhelming fatigue which has resolved by and large, although my energy is not wonderful and I need to rest between tasks.

During this time I had a dreadful cough which wouldn't go away. I was admitted to hospital twice with this. On the second stay in 2008 I was diagnosed via HRCT (High Resonance CT scan) with Bronchiectasis.

Then about four years ago I started to get cracks at the side of my eyes which were painful. I also started to get weird roughness on the roof of my mouth and mucocoele type lumps in my mouth. I had a geographic tongue for many years.

Not knowing what any of this meant and my GP being hopeless, I was seeing a doctor who had a special interest in ME/Fibromyalgia patients. One day I just casually mentioned about the lumps in the mouth and he looked and said my mucous membranes were very dry. He asked if my eyes were dry. I said "no but that I had pain deep in the eyeballs and cracks at the side of the eyes". He said I think you may have Sjögrens Syndrome.

The upshot was, I went to see an Opthamologist who did a Schirmers test. Result. 1mm of tears left eye and 2 mm right eye.

So that's all that has been done. I would really like a firm diagnosis one way or the other, as that is the only way I feel I can get some cohesive care. I have been treated for each of the individually diagnosed conditions quite well eg. Gastroparesis (Domperidone) and a liquid diet. Bronchiectasis (regular spirometry and long term Azithromycin). Liquid tears for eyes. However no specific person is overseeing the 'package', so to speak.

Does this sound like Sjögrens to you? Admittedly my eyes and dry mouth although everpresent and annoying were not the first symptoms nor the worst.....(although thinking about it apart from the geographic tongue my eyes did stream whenever I went out into the sunlight but this didn't seem like dry eye to me).

I know this is long but felt I needed to lay out what I remember off the top of my head.

Any thoughts would be much appreciated!

Megan

[milkwoman]

It most certainly could be Sjogrens. Anything below 5mm is a positive Schirmer test for Sjogrens. Have you had any blood tests for antibodies?

I have Sjogrens (in addition to lupus) and have positive SS-a (ro) which is a marker for Sjogrens.

Have you been seen by a rheumatologist? With your symptoms they should do a full blood work up for anything rheumatological.

My dry eyes and mouth also were not my first symptoms, in fact, I only discovered that I had Sjogrens through blood work. It explained a lot. I've worn contact lenses for 30 years so I just figured my eye issues were because of that. I never really knew what was causing my mouth issues but now I know. In the last few years the dryness has gotten worse in both areas. I have to use drops daily and a gel nightly. I also have MGD (my meibomian glands get clogged) so I now need to use warm compresses. This has helped a lot.

Biotene products help with dry mouth but I do have to be sooo careful with very hot dishes temp wise. If I get a burn, it will turn into a very painful and long lasting sore.

Good luck to you. Keep pushing for answers!

[Megansheart in reply to milkwoman]

Thank you Milkwoman for your informative reply!

In 2007/08 when all of this started I had some antibody tests done and although there were some anomalies they did not overtly point to anything. However I notice Beverley has said that it may take up to eight years for these autoantibody tests to become positive.

My pulmonologist said recently (2016) that there is something going on with my immunoglobulins and another antibody (he was looking for reasons why I had repeated lung infections) and then I told him that I had been queried for SS but not had a definitive diagnosis. He said "aha that could explain what I am seeing here". Hence my renewed pursuit of getting to the bottom of this.

I have to see my GP this coming week for a script, so may make a double appointment and explore whether she can do some initial tests before referring me to a Rheumatologist.

Interesting what you say about MGD. I have had two episodes (never occurred before) of blocked meibomian glands in the past two years. Like you, the warm compresses were suggested which I have become slack with. Groan! So much of our lives it seems are taken up with 'servicing', our recalcitrant bodies one way or another!

Again thank you for your valuable input.

[HollyHeski in reply to Megansheart]

Hi, I have Ss as well as APS -the trouble with these autoimmune problems they are different symptoms for all which makes diagnoses hard. Push to see rhematologist, once we have some answers it helps deal with it.

Take a bullet point list of all your symptoms (even ones that you no longer have) with you so you dont forget & they can see all the history.

Good luck & keep in touch.

[bambino4]

Yes megan you may well have sjogrens as i was finally diagnosed after 5 yeara of dry eyes leading into other things ..and yes dry eyes stream in the sun and wind and at peculiar times! Only a Rheumatologist i believe can confirm a definite diagnosis of Sjogrens though as i understood!

[kerriebn]

I'm not a doctor so can't really say. However I do know that there are all sorts of symptoms which can take years to 'piece together' to work out its Sjogren's. With your eye problem - I was told by the eye specialist that the watery eye especially when out in the sun is actually the dry skin 'peeling' from your eye. That's why it doesn't seem dry. This happens to me all the time. I have a persistent cough which is a lot worse if my airways are dry (not drinking enough water). I have also been diagnosed with a respiratory disease. I see a specialist rheumatologist who look after Sjogren's - you may be better seeing this type of specialist.

[Megansheart in reply to kerriebn]

Thank you HollyHeski, bambino4 and kerriebn for your input.

I will endevour to pursue this Rheumatologist angle and find one who is Sjögrens aware.

The interesting thing is that for me my eyes have been the least of my worries as I had other worse symptoms. However now that these other things are levelling out a bit ( due to good treatment) I am becoming more conscious of my eyes. I have been doing drops morning and night and sometimes inbetween for three years and it has helped with the deep eyeball pain I had. Sometimes I still get the cracks on the outer corner of the eye which alerts me for the need to put in drops more frequently.

I have to say though that when doctors say "have you got dry eyes" that is the silliest thing to ask, as people often are not aware that their symptoms may be related to 'dry eye'. Like for me, I had streaming when outside, pain in the eyeball and cracks but not grittiness or other things that may typically be associated with 'dry eye'. I could have said 'no' and the doctor may not have pursued the opthamology follow-up.

HollyHeski I like your bullet points list suggestion - thanks.

Bambino4 thanks for confirming that streaming eyes can actually be 'dry' and kerriebn along the same lines, very interesting what your eye specialist said about watery eyes. Certainly fits in with my experience.

Kerriebn do you know if your respiratory disease is related to Sjögrens?

Again I much appreciate your responses. It's a learning curve isn't it?

[kerriebn in reply to Megansheart]

Yes my respiratory disease is related to my Sjogrens. Unfortunately some people suffer dry airways, lungs, kidneys. What I have found helps is a room vapouriser and steaming over boiling water with a solution of Himalayan salt sole. I can let you know how to make this. I swear by it especially in the winter when the air is quite dry.

[Megansheart]

Kerriebn, my Bronchiectasis (lung condition) was diagnosed in the two year period when everything was first going wrong for me in 2007/2008. I was so sick. Even though Bronchiectasis is an ongoing and permanent cross to bear, whether it is an extra glandular symptom of SS or an independent happening is the question!!!

I'd like to know for sure whether all the other symptoms which happened to me at that time too were/are extra glandular symptoms of SS....loss of balance, peripheral neuropathy, foggy brain, GI motility issues etc etc......perhaps I'll find out soon.

I was a bit flabbergasted when I found online a "Tracking your Sjögren Syndrome" work sheet the other day and noticed that in EVERY category mentioned there, I had symptoms. Most of them are recorded on my patient history yet the 'light bulb' hasn't ever gone on by any of the attending doctors. They know so little, often.

I've got an appointment with my new GP tomorrow and have written up past & present symptoms and printed off tests which were done in 2007/2008. We'll see where we go from there. I will ask her if she can order them again. This is a different GP....much more proactive than my last one.

[Megansheart in reply to Megansheart]

Result of my GP visit yesterday.

Had to appraise this new GP of my 'story' (signs and symptoms) from 2007/08/09 first. I showed her the Opthamologist's report of the 2012 Schirmer's test result, which stated that based on the result of the Schirmers test and my history in the lead up to the test, he felt that I probably did have Sjögrens Syndrome.

I mentioned to her that the ANA, ENA, Anti Ro and La were all negative back in 2007/2008. She ordered a number of tests....ANA, ANCA, ESR amd a few others but not the Anti Ro and La. Not sure why. Perhaps she felt she'd rather a Rheumatologist to order those.

I forgot though to ask the GP if the tests come back negative, should I still go to the Rheumatologist she referred me to? I'd suppose that if nothing is positive after eight plus years then they won't become so!

I guess I'm resigned to the fact that everything will be negative. After having so many tests done over the years and the insinuations of some doctors that "it's all in your head" what else should I expect?

[knash88 in reply to Megansheart]

Hi Megan,

I was diagnose with Sjogren's Syndrome last year at 26 years old. Some of your symptoms sound like you may have it. Other symptoms you are having (twitching), not saying are not from it, I am just not familiar with it; however, Sjogren's can cause many different symptoms. I went to my GP about my symptoms and she tested ANA and a few other things, one of them was rheumatoid factor (RF), some people who have Sjogren's have a positive RF. After my ANA and RF came out positive she sent me to a Rheumatologist. The Rheumatologist did a whole bunch of tests, and two of them were to check for Sjogren's which were anti-ssa and ssb. both of them came out positive. My symptoms at the time were extreme dry eye, dry mouth, pains in my knee joints, and fatigue. Today I deal with all of those, however it know affects the joints in my wrists and hands (I had a flare up back in January exactly the same as someone with Rheumatoid arthritis, but I tested negatve for RA), I have chronic fatigue, my mouth is so dry at times that with any food that is dry or somewhat dry I have to put water in my mouth to moisten it.

I would definitely keep the appointment with the rheumatologist, just because you may be negative Sjogren's the rheumatologist can test you for other things. It's always good to see a specialist because they have more knowledge in the field. Good luck, and keep us updated.

[Megansheart]

Thank you knash88. Very kind of you to reply.

[Megansheart]

Hello SS folks,

Last week I had blood tests done to follow up on the negative ones I had done eight years ago. 👌🏼

Well yesterday the nurse phoned and said the doctor wanted me to make an appointment. I thought if she has asked me to come in for a trivial reason I wouldn't be that happy especially if I have to pay $70. Anyway.....

.....the upshot was that the ANA's were positive 1:1280 speckled pattern and ENA Anti SSA (Ro) was positive as was the Anti Ro52. Anti SSB (La) was negative.

My GP was also concerned about some of the liver function tests so am having another test tomorrow.

I will be going to see the Rheumatologist. She faxed the referral and test results to her while I was there. So now the wait for an appointment.

I have to say I had resigned myself to accepting that the test result would be negative AGAIN, so although all my research and other indicators pointed to Sjögrens I was somewhat taken aback when finally confronted with it.

Hopefully there may be some treatment available as some days (often) I feel very ill.