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Medical Forum / Diseases and Disorders / Lupus / July 2006How are we to know???????????
Zuska, Oh my dear. What a terrible time you have had. I feel for you and send lots of hugs and "Positive Thoughts." I am also on Plaquinal but every time I report something like this to my Rheumie, he just says, "Oh I wish you women would stay off the Internet! You talk yourselves into most of these situations!" I have also been having feeling a progressive weakness in my thigh muscles. My partner and I like to go for a walk at least once a day but I have been feeling a lot of pain in my thighs the further I walk. Then, at night, the pain in my thighs wakes me up. I thought it was just my Lupus getting worse or the change of climate. (We have have just moved from Alice Springs in Central Australia, where it is hot or warm all the time, now we are living in Adelaide where it is winter and I feel the cold a lot.) I don't know wether to mention it to my Dr. or just wait and see if it gets any worse. Anyway, try to keep your chin up and please let us know how you get on. Diane > Zuska, > Oh my dear. What a terrible time you have had. I feel for you and send > lots of hugs and "Positive Thoughts." > I am also on Plaquinal but every time I report something like this to > my Rheumie, he just says, "Oh I wish you women would stay off the > Internet! You talk yourselves into most of these situations!" Yeah, God forbid we educate ourselves and share information with others who have been through it and take control of our own bodies and treatment... It's not like we live in a free country or anything! damn doctors... > I have also been having feeling a progressive weakness in my thigh > muscles. My partner and I like to go for a walk at least once a day but [quoted text clipped - 6 lines] > I don't know wether to mention it to my Dr. or just wait and see if it > gets any worse. I've talked to alot of ladies who have gotten restless leg syndrome and those sorts of problems. You probably know that already. > Anyway, try to keep your chin up and please let us know how you get on. > Diane > I am also on Plaquinal but every time I report something like this to > my Rheumie, he just says, "Oh I wish you women would stay off the > Internet! You talk yourselves into most of these situations!" Men, too. One doctor diagnosed me with porphyria, after talking with me for less than ten minutes. Her only question was the exact type of porphyria I had. She stuck to her misdiagnosis even after the test results came back negative--she said that negative results weren't always conclusive. Meanwhile I did all the research I could, including a lot of Internet searches, and I couldn't decide if the diagnosis was right or wrong. The next doctor I saw was an expert in porphyria. He decided that I was delusional, because "the patient diagnosed himself over the Internet." No mention of the other doctor, who just happened to work at the same university hospital as he did. --Bill Thompson I am so lucky because my doc will go to the internet to find new things on lupus, etc. and keep updated. He will also listen to me even when I say things like "I found this on the internet and thought maybe....." I think some docs just want to be the all knowing powerful doctor and when we know too much it threatens them. As Stephen B. Strum, MD (author and renegade prostate cancer doctor) says MD does not stand for Medical Deity. He is so right about that one! Bev > Zuska, > Oh my dear. What a terrible time you have had. I feel for you and send [quoted text clipped - 14 lines] > Anyway, try to keep your chin up and please let us know how you get on. > Diane Oh Beverly, You are so right! I had my GP overdose me on thyroid medicine. They act like they know every thing and perish the thought they might make a mistake! And a lot are reluctant to send you on to a specialist, knowing that whatever the problem is, is out of their expertise. It has gotten to where you have to take matters in your own hands. It is your life and health! On top of everything else, insurance companies dictate what they can and cannot do and limit their tools to find out what is wrong. The power is in the wrong hands and we are sometimes helpless to do anything about it unless we are independently wealthy. All we can do is the best we can and keep on searching for the answers and pray God puts the right person or doctor in our path. Sorry I got my dandruff up. It just makes me angry. I know so many people that have suffered needlessly because of stupidity. Grrrrr..... Paulette > I am so lucky because my doc will go to the internet to find new things on > lupus, etc. and keep updated. He will also listen to me even when I say [quoted text clipped - 23 lines] > > Anyway, try to keep your chin up and please let us know how you get on. > > Diane > I am also on Plaquinal but every time I report something like this to > my Rheumie, he just says, "Oh I wish you women would stay off the > Internet! You talk yourselves into most of these situations!" Let's hear it for blame the victim! I agree that there are a lot of sites that are hogwash, but a blanket statement like that assumes that we all will fall for any 'snake oil salesman' that comes along. > I have also been having feeling a progressive weakness in my thigh > muscles. My partner and I like to go for a walk at least once a day but > I have been feeling a lot of pain in my thighs the further I walk. > Then, at night, the pain in my thighs wakes me up. I thought it was > just my Lupus getting worse or the change of climate. Back in April, that was what I thought. I even called the Rheumatologist and asked, "Is this what a flare is?" I never got an answer. Actually, I would not have been to see the Rheumatologist until June except for my therapist. When I almost fell in her office, she asked if I would mind her contacting the Rheumatologist ... I said no problem. After me trying to get in to see her for three weeks, all of a sudden I had an appointment the next day! > I don't know wether to mention it to my Dr. or just wait and see if it > gets any worse. If I were you, I would without a doubt talk about it with the doctor as soon as possible! If you are having weakness, pain, and interrupted sleep, there is no reason to keep that to yourself. > Anyway, try to keep your chin up and please let us know how you get on. No problem ~ support and information is the name of the game as far as I am concerned! Susan aka Zuska I tend to agree with most everyone that it is your body, your life. I sometimes think my research into Lupus causes more stress, but I believe in being fully prepared. My Rhumy is not like many I have heard about here. He is very concerned for my well being, looks for my input on medicines I am taking, always answers any questions I have and Calls me at home / work inbetween visits to see how I am doing. If my doctor showed disrespect for my questions or tryied to imply I was making my self sick I think I would be talking to the medical review board. you are paying your doctor for a service, perhaps you shouls remind her of that? Sorry if I sound harsh but you never play around with your health. Absolutely!! Well said, imo you are right on and I agree with pretty much everything you said! I am fortunate too with my pcp and my specialists... they are all respecting of my views and also view my input as valuable, so allowing me to be my own self advocate! If we don't care for ourselves first then we shouldn't expect for anyone else to do it either! If they didn't accept my views and ways? I too would not be seeing them for subsequent appointments; and they would be reported - just on principle. We have to have good patient-doctor PR if they in turn want compliance. And if we don't comply? The same goes in reverse, and we shouldn't expect their respect. Good luck! hugs, Shelagh http://clik.to/lupus > I tend to agree with most everyone that it is your body, your life. I > sometimes think my research into Lupus causes more stress, but I [quoted text clipped - 7 lines] > remind her of that? Sorry if I sound harsh but you never play around > with your health. |
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