Thanks very much. I think the medical care I’m getting is tertiary in the sense that I’m seen or spoken to in a reasonably large Scottish university teaching hospital. The problem is that it’s all happened in the run up to and then amidst a global pandemic. In a sense this has been to my advantage because I’ve mostly been speaking to my doctors by phone - which tends to make me more lucid and focused.

This lack of face to face contact has been particularly useful with neurology because it has enabled me to push the agenda back towards my symptoms, confirmed diagnosis’s and wealth of existing imaging. Previously the neurologist’s have tended to grab the advantage of having me captive to run physical tests which were then used to diagnose hardware/ software conversion issues. And the more we deny that we are pathologically anxious the more this is viewed as a sign that we are suffering from anxiety - whether about existing health conditions deteriorating or new unexplained symptoms - or just inherently anxious and therefore prone to somatisation issues.

And knowing how easily this can happen from past experiences causes a kind of medical PTSD of course so it can easily become a vicious circle.

However I think I’ve now escaped all this at last in terms of my own multidisciplinary team. But the bad smell lingers on and this is why I haven’t reported my locking eyes (awakening ptosis is the medical term I believe) wobbly neck or weakness in arms until I felt safe to do so - years after they first began.

I don’t think my antibody test for MG will be positive. But a little part of my wants to mentally prepare just in case and also to know that I’m still going to have these symptoms taken seriously if and when when my tests come back normal.

So it’s useful to know that my tingling arms and resting weakness is more likely to be part of my existing conditions rather than some new autoimmune pathology.