Recent doctor visits

Well what can I say, a lot of explaining to the doctors about what symptoms that I am experiencing and as usual a bunch of tests were ordered. Still having the symptoms and nothing has been done. My Rheumotologist suggested that I write to the main hospital here and suggest that we get a Sarcoidosis specialist there so that I won’t have to travel to get answers. So far I am seeing about 7 or 8 different doctors and none of them are Sarcoidosis specialist. Not saying that they are not aware of what this disease is, but they are constantly looking on the internet during my visits to find out how they should treat me. Nothing is working. I am getting tired of being tired.

I have been experiencing pain down my left side and my PCP even felt the granulomas in my back and under my ribs. Yet she still thinks that the pain is muscular. Tell me why when the spasms are severe, they are localized on or around the nodules? I need someone to know what they are doing. My labs were done and my Pulmonologist called to tell me that I am severely anemic and my iron levels are very low. Wow! What else is new? I need to know what to do for these granulomas that are growing in my body. This happened before when I told my Opthomologist about the nodules in both of my eyelids and he ruled them as my lacrimal glands being blocked. NOT! Six years later and the end result of me looking like Mike Tyson beat the crap out of me, I went to another doctor who removed large granulomas out of my upper and lower eyelids the size of large gumballs. They were later ruled to be Sarcoidosis granulomas. If only these doctors would listen.

The need for more Sarcoidosis research is necessary. Too many of us are dying unnecessarily because doctors don’t have a clue. I don’t want to die anytime soon. I want to see my children obtain their dreams and also see my grandchildren. Is there help out there????