I want to add something. I know how devastating this disease is. Physically and emotionally. Don’t give up on yourself. It takes a lot of hard work. When I was still in the hospital, two days into treatment, I could barely walk down the hallway. I cried a lot, because I felt so alone. After all, this is a very rare disease. I was sure I would have to use a walker for the rest of my life. Just walking around your house is good exercise. Someone on here said that they had new respect for people with physical disabilities, and I agree. You don’t know what you’ve got, until it is gone. On a different note, anxiety can make things worse. Try to stay positive.
Hi, I have just been discharged from hospital after having a relapse, was originally diagnosed and treated in January 2015 and relapsed 2 weeks ago, this time around I can barely walk and feel very depressed and tearful a lot of the time. I am trying to stay positive but it’s hard.
Hi Scorpio1 , I am so sorry that you relapsed. That is actually a big fear of mine. staying positive is so hard, when your world is turned upside down. My doc told me that people who initially got sick with stomach symptoms, rather then respitory symptoms have it worse. I had a respiratory infection. Which were you? Relapse is very rare, and to relapse so close to your first episode is terrifying. Were you treacted with IVIG?