Hi all. I need some objective views please. I am a 47 year old mum of 3 in the UK. I have a 25 year history of mild/manageable lupus/UCTD but have no antibodies to support this however it is defo an auto-immune process. In 2012, my symptoms changed and I started to experience episodes of weakness in my upper legs, chest and left eye. Sometimes the toes of my shoes just don't clear the ground properly. This now involves my upper arms too plus swallowing and includes sleep apnoeas. Exertion greater than a good walking pace will leave me feeling very ill. My most feared symptom is my reaction to cold - it can be warm but a cool breeze and/or inactivity will start a violent shivering particularly affecting my ribs, hips and generally overall. This quickly progresses to severe, unrelenting spasm which is painful, exhausting and will make it hard to breathe when lying down.

No one has answers. I have been tested for every Antibody under the sun - all clear. I have had an SFEMG and RNS - the latter showed decrement but was deemed to be 'artefactual' ie operator error. No MG antibodies. I have seen a Neuro who sat on the fence and noted 'subtle evidence of proximal myopathy'. The reaction to cold is intense - today was 18 degrees ( warm for UK) but the breeze cooled me off so badly that I had to go to bed with an electric blanket. When I got up 3 hours later, I was still shivering. Every part of me now hurts as though I have undergone seriously arduous physical exercise. I don't know what to think, do or ask. Any pointers would be so gratefully received. Thank you Clare