Monday, November 29, 2010

Exciting news.....

I was out grocery shopping today and my cell phone rings. It was my doctor. He said that he had sent my case to a Dr. Iseman at the National Jewish Hospital in Denver for review as well as some questions. Dr. Iseman is a specialist in pulmonary and respiratory diseases. Dr. Iseman said that I have the typical sarcoidosis case. He said that the MAI is nothing to be concerned about. He said considering where I live, it does not surprise him that it has shown up. He said we are doing the treatment right and to continue to watch for any other signs of MAI. 

My doctor asked how I was feeling, and I told him not any better. He said tomorrow when I come in, they are going to double the dosage of the steroids. I asked if the anxiety and horrible fatigue is part of it, and he said it is, and we can discuss giving me something for it!!! 

As much as I've complained about my doctor, I have to say that I am quite impressed with how he's going out of his way to find outside help with my case. I feel like such a weight has been lifted. I don't feel like anyone thinks I'm "nuts" now (even though I know I am...but it's the medicines fault!)!! I am so happy to have received this news today and see how things will go from here!!

Monday, November 15, 2010

It only took 2 years.....

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.