Sarcoidosis

[Guest]

Hi, I diagnosed w/Sarcoidosis in March 2000. My kidneys producing protein, I have enlarged lymphnodes in my lungs, I hurt in my joints ache in my legs all time, my Cholesterol tryglicerides went sky high, I have no energy feel bad all time. I don't work as I am battling two diseases at one time. I taken off Prednisone once more. My Pulmonologist said he is only 99% sure it is Sarcoid. I said well find out 100% sure he won't. Does make sense to any of ? It doesn't to me. I know I have something. I even get sores in my nose, on my t on my abdomen. My blood pressure is low instead of high. I go back to doctor on May 2 would like to hear responses to bee I go, please. Thanks, Cynthia

[Guest]

Hi, I was misdiagnosed with Sarcoidosis after a transbronchial biopsy suggested Sarcoidosis, my MD said he was 95% sure that's what it was. The only way to know for sure he said was to have the open lung biopsy. After ruling out CF, ACid reflux,lupus and Wegener's Granulomatosis. I went for the open lung biopsy. The surgeon said there was an 80-90% chance of a ddefinite diagnosis. It came back as a vasculitis, of an atypical Wegener's Granulomatosis. My blood tests for this disease were negative. I thought to write when I read aabout the sores in your nose. WG can cause these types of sores, and many of the symptoms you described. Review this with your Doctor as a possible Dx. I took steroids ffor 6 months with little improvement. WG does not respond to steroids alone, I am told, it must be administered with chemotherapy/immunosuppressent therapy as well. I am NOT a Doctor, just a Proffesional Patient. GOOD LUCK

[Guest]

I didn't know that sores in the nose were related to sarc. either. I use to get them alot, near the front, very sore! Also, I have Reynauds, but haven't been diagnosed with syndrome or phenomenon. I wonder how many others get this also, I do know that it is related to vasculitis, but no-one ever said that I had that. Sometimes Professinal Patients have better answers from doing their homework. Thanks for your input on this. Look forward to hearing from you again.

[Guest]

Sarcoidosis is a diagnosis of exclusion, that is exclude every other possible diagnosis and then you have sarcoid. It is really impossible to exclude everything to 100% certainty. What one does is reasonably exclude everything else then one treats it as sarcoidosis, monitoring the response to therapy, if it does not behave in a typical fashion or other things show up then one revaluates. If it responds in the normal fashion then one is comfortable it is sarcoidosis. Sarcoidosis can cause skin lesions, and this would not be unusual, without seeing the lesions it would be difficult for me to comment on whether they are the typical lesions.