You never know how much of a relief it is to hear you finally have a diagnosis until you've heard those words and see it on paper. I FINALLY got that today!! I am 2 weeks short of my 2 year anniversary of dealing with this horrid disease....SARCOIDOSIS. Last few weeks I haven't been feeling so good, so finally decided I better make an appointment at my doctor. We decided it's time to try something so we had to make a decision as to whether I just try the steroid and watch for more symptoms of MAI, or take the steroid AND the meds for MAI. I told him I would rather try just the steroid and watch. So I have started the treatment and watching!!
My doctor was telling me about another patient he has that has the EXACT same symptoms I have and went through a trial study and have found that they have been able to reduce his steroids and he's started using Lipitor as the anti-inflammatory. I've been doing lots of reading and found there are more medications they are trying and are working to help people maintain this disease. At this point, there is no cure. Not many people have heard of sarcoidosis. Now that I have a confirmed diagnosis, I am praying about starting a support group in the area. I've had several people tell me they would love for that to happen. So I'm praying that after the first of the year, I can help get that started.