I will be seeing my neurologist for the second time tomorrow afternoon. My question is: What should I ask him? He is likely to say that I should have muscle and/or nerve biopsy to investigate persistent muscle weakness. Has anyone with a similar problem been offered any different investigation/s by their neurologist, that gave a reason for the weakness and wasting?
I have lupus, Raynaud's, erythromelalgia and ostearthritis but until recently was fit, strong and energetic. For the last 18 months or so, I have been getting progressively weaker, with muscle wasting particularly in my lower legs. I have had NHS physio and hydrotherapy; I've been doing floor-based exercises fairly assiduously since January 2016 (when I had my second hip replacement but the generalised weakness had started prior to that operation); I tried Pilates but my balance is so poor that I got disheartened in the classes. I've been going to the gym at least 3 times/week since early November '16. but my strength hasn't increased and neither has my endurance. I am still on the lowest level of resistance on the cardio equipment and my legs feel like jelly after a few minutes.
MRI of thigh muscles didn't show myositis. I had neurophysiology testing (nerve conduction studies and electromyography) in November which showed peripheral neuropathy consistent with my age (!65), lupus and Raynaud's.
The rheumatologist requested a battery of investigations (inc DEXA, coco) and blood tests. Bloods mostly ok apart from a persistently raised CK (actually down from 992 to 364 but still way above normal) and Troponin-T raised at 49ng/L. Because of trailing to and from the various hospital departments for these rather scatter-gun investigations over the next few months, I shan't see her again until July. Thanks,