View Full Version : I might have gotten some answers
07-10-2009, 05:45 PM
So my rheumy (the 2nd one that I went to) called me this morning & left a message to call him back as soon as possible. I don't have an appointment with him till the 21st. Immediately the mental warning flag went up. So I call, tell the nurse my name & she instantly recognizes it and says, "Oh the doctor wanted to speak to you. He's right here". The doc gets on the phone and tells me that he got the chest xray results back. He had made me get one last week to be certain he could rule out a couple of AI diseases that he was 99% certain that I didn't have so I went. Turns out that the report shows something called hilar adenopathy, which he said is enlarged lymph nodes. He wants me to see the pulmonary specialist immediately and he wants a CAT scan. Luckily, the pulmonary doctor can take me on Monday and the radiology office near me is walk in so I can get it all done on Monday. Hopefully, I will get some answers from the pulmonary doctor. Turns out that what the rheuy was trying to rule out is just what I might have and would explain so many problems (chest pressure/pain, chronic sinusitis, weird rashes on arms & shins, fatigue, night sweats, eye and skin lessions). Based on the xray, he is thinking that I have Sarcoidosis. He wants to get another opinion on that from the pulomary doc and then I go back to him.
I've been bouncing around some sights to learn more about sarcoidosis (dangerous & confusing I know :wacko:) but I just need to know what it is he is talking about. I've noticed on some sights that there may be a link between Lupus and Sarcoidosis. Does anyone on here have Sarcoidosis or know about it???
Keep your fingers crossed for me for Monday.
07-10-2009, 06:17 PM
Don't have any insights/information for you. Just wanted to let you know I'll be thinking of you. Glad to hear that it sounds like you're on your way to getting some answers!
07-10-2009, 07:17 PM
My uncle has sarcoidosis (sp?) of the central nervous system which is rare. He has had it since I can remember. He is on and off the prednisone as well as other meds. I'm not sure about information about it. Ten years ago the drs thought that I had it however I had Hodgkin's Disease instead. I will be thinking of you. Let us know how you do.
07-10-2009, 09:59 PM
Thanks for the good thoughts guys! I will let you know what happens. Lisa, how is your uncle doing now?
07-10-2009, 11:38 PM
I dont know anythign about it either, just wanted to say good luck on monday xxx
07-11-2009, 05:44 AM
Good to hear you at least have a stepping stone to go on and then move from there. From the research I did I found out that hilar adenopathy is the enlargement of the lymph glands at the root of the lung and Sarcoidoisis is a disease. It is characterized by the development and growth of tiny clumps of inflammatory cells in different areas of your body. And it can affect virtually any organ, but most commonly it affects your lungs, lymph nodes, eyes and skin. Doctors believe sarcoidosis results from an abnormal immune response. The course of the disease varies from person to person. It often goes away on its own, but in some people symptoms of sarcoidosis may last a lifetime. When it comes to treatment many patients with do not require treatment, because symptoms, after all, are usually not disabling and do tend to disappear spontaneously. However, when therapy is recommended, the main goal is to keep the lungs and other affected body organs working and to relieve symptoms. The disease is considered inactive once the symptoms fade. Corticosteroid (http://www.medicinenet.com/script/main/art.asp?articlekey=2849) (prednisone) drugs remain the primary treatment for inflammation and granuloma formation.
As far as the research I did regarding the involvement of sarcoidosis and lupus there is a 2009 study from the Brigham and Woman’s Hospital Lupus Center which reports a handful of cases in the last 60 years of sarcoidosis and SLE occurring together. So basically although it is not common it can occur.
Hope this helps a little GOOD LUCK on Monday and remember go in with a list of questions so you don't forget to ask everything on your mind at the appointment.
07-11-2009, 08:12 AM
Goodluck for Monday and you'll be in my thoughts.
07-11-2009, 12:47 PM
thanks for the good wishes and thoughts! And thanks Spanglishqueen for the good info! I really appreciate that.