Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Tracie, Thanks for the info. None of my doctors will give me prednisone, methotrexate, etc. I was on it years ago - my rheumy gave it to me but they just want to keep waiting and seeing. The problem is right now I am in a "remission" so they don't really see anything to help me with. And of course as I said no one thinks the hilar nodes are significant. I have a very good pulmonologist, but she tells me with each visit that the nodes are probably there because I have had bronchitis or a cold and they will go away. She gets one more visit - then if she doesn't do anything she's out. I don't want to get really sick but hopefully the next time I see her I will be very sick. I did make it to Yoga last night and it was wonderful. I take Hatha yoga and it is very simple and does not wear me out. The stress relief you get from Yoga is sooooo great and I recommend it to anyone who can tolerate it. Do not take any Hot Yoga or any of the classes where the Yogi tries to put you into difficult positions. Hatha Yoga is very good for people with any health problems but be sure to take water with you as with any exercise you will get hot. And we all know how heat affects us - so hydrate before, during and after. I also will go to simple positions if I start to get overheated so that I will cool down. Well so much for the Yoga diatribe. I just cannot say enough good things about it because of it's stress relieving properties and it makes you feel good about yourself ( - this would be great for you). I also want to say in this rambling, that I appreciate all of the help everyone is giving me. I, like so many of you, had a terrible childhood and see so much of myself here. Not only does the NS info help, but knowing there are other people out there who suffer with low self-esteem, depression, etc... keeps me going. I know that I am not alone. Thanks to everyone and here's hoping for a great day for everyone. Terri G. >> > > > > . I have enlarged hilar nodes and have to have my third chest CT in three > > months. The node on the right is located in an area that is very dangerous > > to remove and the one of the left is not considered significant enough to deal > > with. But they are both still there after six months and no one feels this > > is significant. > > One of the things with sarc is that they don't go in and do surgery to remove > the granulomas. Usually, they look like "broken glass" and are so invasive > that there wouldn't be any lungs left. so they stick us on prednisone and hope > that they shrink--and we go away.> However, since we all show the signs of multi-system sarc and NS--it's time > for the big guns.> Get out those immunosuppresants and get as healthy as you can-- it may take a > new MD or two--but it's not multiple choice. > You may always have the granulomas in your lungs and lymphs-- but at least > the progression can be stopped.> > Hugs--and step over, that soapbox needs to be shared,> Tracie> NS Co-owner/moderator> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 as I said no one thinks the hilar nodes are significant. I have a very good pulmonologist, but she tells me with each visit that the nodes are probably there because I have had bronchitis or a cold and they will go away. My hilar nodes have been prominent ever since I got sick with this disease 15 yrs ago. They aren't going to go away-- they'll stay prominent, because the sarc has scarred them-- so unlike bronchitis inflammation, they rarely shrink back down. If you are having symptoms, shortness of breath, coughing, wheezing, tightness in your chest-- or any of the other gazillion things that happen with NS-- then your MD's need to get you on a multi-system sarc protocol. The fact that you already have had the biopsy to prove that it is sarc that hit your lungs--should be a HUGE clue that the body pain (arthralgias), dementias- short term memory issues, chronic fatigue, vision stuff-- is all symptoms of active sarc. My lungs are not currently a problem, but the body and brain problems are. So we treat those issues-- and it's the same medication that they'd use if I had active pulmonary sarc-- and hope that the lungs don't flare. (Basically, as long as I don't get sick with a virus or respiratory infection--my lungs stay status quo-- my diffusion is stuck at 93%--and drops when I exercise or get sick.) My lung volume is down to only 60% of normal-- so I have lost 40% of my lungs--and that 60% of my lungs is functioning -processing-- the air I breath in- at 93% effectiveness. so any small problem, puts me back on oxygen immediatley. Your pulmonologist isn't up to date on what happens when sarc hits more than one body system, and probably doesn't want to know-- after all she's just "lungs"-- yet you are in trouble with the progression of this disease-- since it's effecting other body systems. I know I'm not as clear as I want to be-- but you need MD's that will look and learn about multi-system sarcoidosis. Blessings, Tracie Quote Link to comment Share on other sites More sharing options...
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