Seeking Help for Unknown Medical Issue

Hello Amy,

I feel for you as I have been through this no-man’s-land of diagnosis.

I know this is not about me but by outlining some of my experience may trigger in you or another reader something which may prove useful.

2006 - I had a dreadful cough for eight months eventually hospitalised and treated for Mycoplasma Pneumonia (a Molliute not a virus).

2007 - 3rd August became very ill with disparate symptoms mostly neurological (extreme fatigue, balance issues, nausea, fasciculations, lancinating pain, electric currents in feet, word confusion etc etc). Bed ridden for four months.

Numerous blood tests (including ANA’s), brain MRI, EMG and nerve conduction tests performed, all NAD.

Early 2008, Developed severe Gastroparesis (diagnosed with gastric scintigraphy) and gut dysmotility. Could tolerate a liquid diet only for four years.

Mid 2008 - cough returned. ANA’s repeated again all seronegative. Diagnosed with bilateral Bronchiectasis with an HRCT scan.

Over the next four years, fatigue gradually improved. One good day in fourteen then one good day in ten. Then eventually the numbers reversed to become one day every fourteen was a bad one, so that was a blessing.

Through these years I just knew there had to be an ‘overall’ diagnosis but everything was divided into seemingly mini-diagnoses. Fortunately I saw various specialists (neurologists, rheumatologists, endocrinologists, pulmonologists) and received treatment for each of these ‘mini-diagnoses’ such as Beta blockers for the POTS, Domperidone for the Gastroparesis, Lyrica for the Peripheral neuropathy, Pain meds for the extreme muscle and joint pain. This made life tolerable even though I just knew, because of the timelines, that they all had to be connected in some way.

2015 - by now it was eight years since developing all these ‘symptoms’. One day I went into my new GP doctor and asked her to repeat my ANA’s, anti dsDNA, anti Ro’s, La’s etc. etc. She questioned why and I laid out my current and past eight years of symptoms. The doctor agreed, then called me back a few days later needing to ‘talk to me’.

At last I had become SEROPOSITIVE for Sjögrens Syndrome.

At last I was believed and taken seriously, although I was ‘lucky’ in that some testing was positive along the way (as previously explained).

Interestingly dry eyes and dry mucous membranes/mouth are usually the preeminent symptoms associated with Sjögrens, however for me, neurological symptoms were my initial and by far the most life altering symptoms.

Post viral and post infectious syndromes such as ME/CFS can certainly occur after EBV and potentially any viral infection, such as Covid.

I’m reluctant to say though, best of luck being believed by the medical profession as the weeks, months and years go by without quantitative proof of aberrant pathology. This seems to be many people’s experience.

I hope something either shows up for you eventually in testing or better still, everything goes away!