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!