Hi Annie

Annie, thank you once again for your reply. Sometimes I think we lack the courage of our convictions to demand a pro-active approach from our Doctors. Also, you get used to functioning at a sub-optimal level after a while and become accustomed to new physical constraints. I have just been sent an appt to see my Rheumatologist on Saturday (?) and plan to take a list of points to discuss. I think I probably don't fit the text book picture of an MG sufferer hence the Dr's reticence but I also have Lupus and have had for years with no antibodies whatsoever!

The shivering is strange, no-one else seems to get this. It's not hypoxia nor low blood sugar etc, it starts with my cold intolerance and means that I start shivering at temperatures that wouldn't bother other people. If I can't warm myself up quickly ie if I am out watching one of my children playing rugby then my muscles will quickly exhaust causing my body to turn to jelly and make my already tired chest to be sooo much worse as the day goes on. My O2 sats are always good, don't know how I manage to keep them so high - probably because I was so very fit before things started to nose-dive.

The recovery position that I mentioned for sleep is a certain way the emergency services position you if they want to keep you flat whilst also keeping airways open etc. it's kind of on your side but tipped slightly forward. It is literally the only way for me to breathe by the time I am tired and in bed.

I love the NHS and have had 2 desperately ill babies in the past and they have had hundreds of thousands of pounds spent on them to keep them alive. However, for less immediate needs, the process can be very slow, inefficient driven by keeping costs down. I have tried private medicine with a resp consultant and that was worse,so much worse. What a waste of money.

I will let you know how I get on at my next appt on the 13th!

Thanks again Annie. Take care. Clare