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I need some advice please

Hi. I am a 47 yr old mum with a dx of Lupus/UCTD which has followed a steady path for many years. From 2012 I have started to have resp issues particularly severe when lying flat, sitting back, using my arms ie when cooking and in cold weather. Tests reveal a significantly weak diaphragm but cause unknown. I feel episodes of weakness from my neck down to my thighs, I have tested neg for MG & my SFEMG was 'unremarkable' although RNS 'showed decrement which seems a bit artefactual' however this has not been repeated. Now that the weather is colder again, I am revisiting the severe spasm/cramping I get in my thoracic, shoulder, hip & thigh area when I shiver. I am very prone to cold intolerance but this is painful & debilitating. These episodes will leave me struggling to breathe by the end of the day. I have had lots of thyroid tests, antibodies, CK, vitamin assays but nothing significant has been revealed. One test revealed low potassium - cause unknown. I took myself to an osteopath last week for help with relaxing my upper body musculature but was unable to tolerate lying flat so not hugely successful. The Drs acknowledge that I am having problems but feel that they have checked everything out so I am casting the net wider myself and would be so gratedful if anyone here has any thoughts..

Hope to hear back, Clare

P. I also find it hard sitting unsupported ie sitting on the floor and will have taut muscles and difficulty breathing

Type of Myotonia: Unsure if myotonia

Country: UK

Re: I need some advice please - by Jan (moderator) - Nov 30, 2014 2:15pm
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