I am tired of articles websites and so on that says sarcoidosis goes in remission and is a benign disease.
What do you mean I am on oxygen, I feel tired am cold my face and my eye on the left side are in pain and sometimes less and sometimes worse.
On Doctor after a lung biopsy told me I had RBILD, I also had NSIP and hypersensitive Pneumonitis. The surgeon make sure you make this biopsy worse while since my DLCO was 45 %. I have malaise all over am cold when I had remacade infusion for the first time it lightened up for a little bit but my last one on the end of July got me so sick I have not gotten over it. I am also under severe stress for all kinds of other reasons that I cannot do anything about they come from the outside. So being in inflammatory disease I guess it does not help.
But I do not understand how one doctor from one biopsy can get a complete different interpretation of what I have.
This doctor specializes in ILD and is the Guru here in Washington State. I still cannot figure out if I really have it or not or if the other doctor was right. So first I thought after though all the docs in the Univerisity of Washington I thought I had it in my liver my diagrpram but now my own says it is only in the lungs and shows in the face. I am tired and feel alone in this battle. The only reason I believed the Dr. in university of Washington is because he explained it had been masquerading in my body for a long time. Looking like other diseases. I used to have. Oh, my I must have had it since I was four then. No it does not go away….. I have never heard of anyone having it go away. And I am on in line support groups. I never have know anyone personally who had horrible disease that makes people think you are faking everything.
I am so tired of this and most people think just take some cordesteriods and you are better yes they also said this when I had my heart attack. But kept getting restenosis in the stents (six of them now). Now I do not know if I get chest pain what I have and go way to much to the emergency room because I also had a duodenal ulcer which made me almost bleed to death. In this rural area some of the emergencies room doc’s do not even know what this disease is. So right away I am pushed of in the cardiac unit. I have malaise all over and people think there is nothing wrong with me except may be the Pulmonologist, family doc and my cardiologist. Get over it they say. I feel ill all over and they say it is sarcoidoisis but it is only in my lungs really and a little bit in my face. I feel cold shilled then get sweats. Right now I wished I was not alive but I have a grandchild coming and it is the only thing that keeps me alive right now. My husband yes, I love him but I am worried he never is going to be home again either. I want him home so they cannot give him the wrong drugs anymore. But fat change this will happen, I love him and I have to stay alive for him also….. Do not tell me to take anti-depressants because they will for sure get me killed as they make me suicidal and will act on it then.
I am sure there are lot worse diseases. But I have this and hurt all over. How?
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I am tired of articles websites and so on that says sarcoidosis goes in remission and is a benign disease.
What do you mean I am on oxygen, I feel tired am cold my face and my eye on the left side are in pain and sometimes less and sometimes worse.
On Doctor after a lung biopsy told me I had RBILD, I also had NSIP and hypersensitive Pneumonitis. The surgeon make sure you make this biopsy worse while since my DLCO was 45 %. I have malaise all over am cold when I had remacade infusion for the first time it lightened up for a little bit but my last one on the end of July got me so sick I have not gotten over it. I am also under severe stress for all kinds of other reasons that I cannot do anything about they come from the outside. So being in inflammatory disease I guess it does not help.
But I do not understand how one doctor from one biopsy can get a complete different interpretation of what I have.
This doctor specializes in ILD and is the Guru here in Washington State. I still cannot figure out if I really have it or not or if the other doctor was right. So first I thought after though all the docs in the Univerisity of Washington I thought I had it in my liver my diagrpram but now my own says it is only in the lungs and shows in the face. I am tired and feel alone in this battle. The only reason I believed the Dr. in university of Washington is because he explained it had been masquerading in my body for a long time. Looking like other diseases. I used to have. Oh, my I must have had it since I was four then. No it does not go away….. I have never heard of anyone having it go away. And I am on in line support groups. I never have know anyone personally who had horrible disease that makes people think you are faking everything.
I am so tired of this and most people think just take some cordesteriods and you are better yes they also said this when I had my heart attack. But kept getting restenosis in the stents (six of them now). Now I do not know if I get chest pain what I have and go way to much to the emergency room because I also had a duodenal ulcer which made me almost bleed to death. In this rural area some of the emergencies room doc’s do not even know what this disease is. So right away I am pushed of in the cardiac unit. I have malaise all over and people think there is nothing wrong with me except may be the Pulmonologist, family doc and my cardiologist. Get over it they say. I feel ill all over and they say it is sarcoidoisis but it is only in my lungs really and a little bit in my face. I feel cold shilled then get sweats. Right now I wished I was not alive but I have a grandchild coming and it is the only thing that keeps me alive right now. My husband yes, I love him but I am worried he never is going to be home again either. I want him home so they cannot give him the wrong drugs anymore. But fat change this will happen, I love him and I have to stay alive for him also….. Do not tell me to take anti-depressants because they will for sure get me killed as they make me suicidal and will act on it then.
I am sure there are lot worse diseases. But I have this and hurt all over. How?
November 3, 2011 - 10:10pmThis Comment
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