I see that we all share a diagnosis category, but have many variations. For 3+ years have been puzzled over sudden onset (a few days)weakness, fatigue and poor balance. Until 2 weeks ago, never heard of "polymyositis." EMG showed muscle and nerve damage. Why not just muscle? My PCP tells me that when I reach the 5 yr. point, there is a 70% chance that I'll still be living (!) Where does that come from? The Dx finally came in when CPK went over 1400.
The cancer center where i was being treated for a rare type of NH Lymphoma (stage I and localized) in 2011 has recently given me the information that there was only a 6 mo. window of opportunity for remission. They had ruled out recurrence of nhl, but didn't persue what else might cause the LDH blood marker to rise. Current doc suggests no treatment, as any of them might "backfire" and make it worse. Is there any reason for me to see a specialist? Previous to being diagnosed, saw two neuros, one rheumy, a hand specialist, and a neuro surgeon--all for nought.
Lastly, in two weeks am to play in a highly demanding bridge tournament. Energy level is a big problem. Any suggestions on how to get a temporary lift? Low dose of Prednisone for 3 days? Cattiene drinks? Of course, plan rest leading into the start of it.
Will be very grateful for any help in understanding.