Guest guest Posted July 30, 2009 Report Share Posted July 30, 2009 He is attached to the University hospital, that's the sad bit! My GP is refusing to speak to me about it at all, which is rather odd, he's normally great with everything... he just shuts down the second I mention the s word. Ah well. Will harrass the doc until he does something useful. Thanks, Matt. > > From: third_usher third_usher@... > Subject: Educating the doctor? > To: Neurosarcoidosis > Date: Wednesday, July 29, 2009, 7:50 AM > > > > > > > > > > > > > > > I've tried searching for this, but either get too many results, or not > > enough! > > > > I see that you all recommend being very proactive re:healthcare. .. I'm > > wondering if anyone has any tips on motivating the doctor? Mine is very > > happy it is in my lungs, lymph nodes, and heart, and does not seem to > > understand the concept that a multi-organ disorder can affect more than > > that little group. Given some of the stuff I've got going on, I'm a > > little concerned about the spread of the sarcoidosis. > > > > Any tips at all on how to manage my doctor into understanding this, > > aside from referring him to the Marshall Protocol, which he has already > > dismissed? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2009 Report Share Posted July 30, 2009 Hi Marla, No, not on any meds or anthing at all. Treatment is a lung function test every 3 months. He agrees with Google that sarcoidosis is not a big deal... from what I can see in the research, it is quite a big deal, as you say. Right now, I feel like I'd rather deal with med side effects than continue the way I've been feeling lately. Thank you. > > > > > > > > > I've tried searching for this, but either get too many results, or not > > enough! > > > > I see that you all recommend being very proactive re:healthcare... I'm > > wondering if anyone has any tips on motivating the doctor? Mine is very > > happy it is in my lungs, lymph nodes, and heart, and does not seem to > > understand the concept that a multi-organ disorder can affect more than > > that little group. Given some of the stuff I've got going on, I'm a > > little concerned about the spread of the sarcoidosis. > > > > Any tips at all on how to manage my doctor into understanding this, > > aside from referring him to the Marshall Protocol, which he has already > > dismissed? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2009 Report Share Posted July 30, 2009 If you have cardiac involvement like a couple of us do, and he's happy about it; he's nuts. The sarc messes with the nerves in the heart, and you get interesting phenomena like severe bradycardia, tachycardia, atrial fib, etc. etc. Thanks to a very good pacemaker I am doing ok, but it's not a problem that is ignored. The bradycardia would strike so suddenly that I wouldn't have warning, I was like a light switch; I never felt faint; I would just go from on to off. That is how I ended up in the woods with my car doing 77 mph (I was on the interstate); coming home from work. Thank the good Lord I hit a stump so hard it got things going again and I came too just before my car was split down the middle by a steel sign announcing the next town. I was so out, that I didn't realize I had hit the stump till I went to have the oil changed in my car and they asked me how I wrecked it. I argued with them and told them I didn't wreck my car, then they showed me the damage. I'm not trying to scare you, but sarc is serious. As to how to educate them, you can occasionally get them to read; not always. I have actually pulled the information up on the internet, you have to do it by system or you will get the same old rhetoric. Like pull up cardiac sarcoidosis, lung sarcoidosis, etc. etc. Understand that most doctors still refer to the outdated information on sarc, where they think for the most part it only effects the lungs, and will magically disappear on it's on. Also, always let them know it is biopsy confirmed, or some of them won't believe you have it. As far as the "marshall protocol" I'll let Tracie, Rose, or Darlene cover that. I do apologize, I do not mean to sound so negative. With good care alot of times there are things we can do to help improve our situation. My pacer for instance made all the difference in the world. I am having trouble with my eyes right now and again running into a doctor who doesn't know what to do. I am trying to figure it out, but I'm new at the eye thing. Also, my ex may have been a stinker but he told me something that when he said it made alot of sense. He asked me why I put up with the nonsense some of my doctors were giving me. He said "you are the customer, you pay them, don't put up with their nonsense" He was right. I am actually an easy going person who hates confrontation, despite the prednisone. But I have had to learn to stand up for myself, learn as much as I can and stay as informed as possible, or I get hurt everytime. Take care of yourself. Here's wishing you peaceful days, beautiful music, and enough joy for two lifetimes. Connie Subject: Educating the doctor?To: Neurosarcoidosis Date: Wednesday, July 29, 2009, 7:50 AM I've tried searching for this, but either get too many results, or notenough!I see that you all recommend being very proactive re:healthcare. .. I'mwondering if anyone has any tips on motivating the doctor? Mine is veryhappy it is in my lungs, lymph nodes, and heart, and does not seem tounderstand the concept that a multi-organ disorder can affect more thanthat little group. Given some of the stuff I've got going on, I'm alittle concerned about the spread of the sarcoidosis.Any tips at all on how to manage my doctor into understanding this,aside from referring him to the Marshall Protocol, which he has alreadydismissed? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2009 Report Share Posted July 31, 2009 It quite surprises me, because even when he doesn't know anything, he is always very fast to whip out his handbook of conditions and his lilttle black book of useful contacts and find someone who does. His silence is worrying me a little. Ah well. Thanks for having my back Connie, that's one of the most reassuring things I have heard in a long time. :-) > > > > From: third_usher third_usher@ ... > > Subject: Educating the doctor? > > To: Neurosarcoidosis@ yahoogroups. com > > Date: Wednesday, July 29, 2009, 7:50 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I've tried searching for this, but either get too many results, or not > > > > enough! > > > > > > > > I see that you all recommend being very proactive re:healthcare. .. > I'm > > > > wondering if anyone has any tips on motivating the doctor? Mine is > very > > > > happy it is in my lungs, lymph nodes, and heart, and does not seem to > > > > understand the concept that a multi-organ disorder can affect more > than > > > > that little group. Given some of the stuff I've got going on, I'm a > > > > little concerned about the spread of the sarcoidosis. > > > > > > > > Any tips at all on how to manage my doctor into understanding this, > > > > aside from referring him to the Marshall Protocol, which he has > already > > > > dismissed? > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.