I've just found this site., and this is my first post.
Do any of you have Churg Strauss Syndrome? Out of the blue in 2008 I developed sudden onset severe difficult asthma. It started with a severe, barking cough, 24/7 & my health has continued to deteriorate, with frequent emergency admissions,despite a NEBULIZER to use at home. I Was forced to accept I'll Health Retirement from my much loved job at the Met Office, and even Critical Illness paid out. I'm only 53.
In 2012 I suddenly developed severe muscle pain in my upper back, neck & shoulders. Morphine is the only medication which touches this pain,mwhich is constant.
In 2013, I saw a programme on Churg Strauss Syndrome on Mystery Diseases on Sky Discovery Channel. it was truly a "lightbulb" moment. So many similarities to me, it was unbelievable.
My GP of 37 years says he had never seen it, but vaguely remembers hearing about its discovery when in Medical School in 60s.
My new Respiratory consultant here in Jersey, unbelieveably turns out to be an authority on the disease& agrees with my concerns. Altho there is no definitive test, I have 3 3/4 mof the required 4'specific symptoms for a diagnosis. Altho a biopsy is impossible, as, due to my constant steroid dose, together with max dose of Mycofenalate, this will render it negative, my Consultant is treating me for Churg.
Anyone here with this diagnosis too??