Hi
I was diagnosed with Chung Strauss in 2015 after sudden and severe issues with arm/leg numbness and pain and also chronic digestion issues. Pleased to say I am in remission for 3 years and my only meds are Azathioprine and ramapril (for heart). I have been told by my specialist that my recovery has exceeded all expectation 😀.
I was diagnosed after going to a&E because I had lost all feeling in my arms and legs and was suffering from ever worsening stomach pains and digestion issues (over a 4 week period), a&E feared a stroke and kept me in for tests. Having ruled out a stroke I remained in the acute medical unit being poked prodded and testing until a week later I was diagnosed with Chung Strauss syndrome. I was diagnosed on Friday and left hospital on Monday morning having been jacked up on steroids and immune suppressants. Getting back on my feet was tough , I was very weak, had lost a lot of weight and muscle and could hardly walk.
Before I was ill I had been a busy HR professional, a very keen tennis player and cycled around town - so very fit. When I returned to work on steroids after short rehab plan I was back full time however over 18 month period I was weened off the steroids. Once off the steroids I had change to part time hours because I suffered from fatigue (mentally and physically).
While I am very lucky to continue all the activities I used to do, muscle weakness and fatigue are my two remaining big issues - I am only working part time because of mental fatigue, I now use an electric bike to get around (really great) and play doubles tennis not singles because of muscle weakness.
Chung Strauss has wide and varied consequences from patient to patient but I am wondering if anybody here has had the fatigue and muscle weakness issues and if either of these have improved over time?
Many thanks
Pedro