Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Kaate, Welcome. I was "Lupus Suspect" for over thirty years! So, you are not alone in that. Also, while I had dx's of Rheumatoid Arthritis, Myofibrositis, Anemia, Type II Diabetes, chronic Lyme Disease, Sjogren's Syndrome, that word "suspect" was appended to the initials SLE until just this last year. I started having symptoms at ten years of age, and didn't get an actual dx on any of it until I was 30. As you can see, it can be a very lengthy, frustrating process. While you wait for that definitive DX, insist on being treated with respect, being heard, and taking charge of your health. YOU are the one who really knows what your body is doing, and how it feels to be living in it. YOU are the one who must continue to live in that body. Most of us have found it very helpful to make lists of questions we want answered when visiting the doctors, lists of current symptoms, medical history summary, current list of medications and allergies. I know it sounds like a lot of paper to carry around, but believe me, it can cut the time necessary for paperwork in a new doc's office to almost nothing if you have all the information at your fingertips. I have even been known to send it ahead of a first time appointment so that the doctor is "in the know" before I get there. Any doctor worth his salt will welcome the information and be grateful for the heads up. If they are resentful, or ignore your info, then you may have to look for another doc, and fast. Take as much information as possible with you to Loyola. They will need all they can get. Let us know how it goes, and how we can help. Hugs, MM aka: Mike, one of the moderators Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Kaate, Welcome. I was "Lupus Suspect" for over thirty years! So, you are not alone in that. Also, while I had dx's of Rheumatoid Arthritis, Myofibrositis, Anemia, Type II Diabetes, chronic Lyme Disease, Sjogren's Syndrome, that word "suspect" was appended to the initials SLE until just this last year. I started having symptoms at ten years of age, and didn't get an actual dx on any of it until I was 30. As you can see, it can be a very lengthy, frustrating process. While you wait for that definitive DX, insist on being treated with respect, being heard, and taking charge of your health. YOU are the one who really knows what your body is doing, and how it feels to be living in it. YOU are the one who must continue to live in that body. Most of us have found it very helpful to make lists of questions we want answered when visiting the doctors, lists of current symptoms, medical history summary, current list of medications and allergies. I know it sounds like a lot of paper to carry around, but believe me, it can cut the time necessary for paperwork in a new doc's office to almost nothing if you have all the information at your fingertips. I have even been known to send it ahead of a first time appointment so that the doctor is "in the know" before I get there. Any doctor worth his salt will welcome the information and be grateful for the heads up. If they are resentful, or ignore your info, then you may have to look for another doc, and fast. Take as much information as possible with you to Loyola. They will need all they can get. Let us know how it goes, and how we can help. Hugs, MM aka: Mike, one of the moderators Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 Kate, you are most kindly welcome. It's a frustrating roller coaster ride, that's for sure, this trying to get a diagnosis. Just burns me how many doctors like to blame things on the first obvious thing they see. With me, it was always my weight. Because I didn't lose weight in huge, unplanned amounts it wasn't possible for me to have SLE, Thyroid problems, low BP, Fibro, etc, etc, ad infinitum, ad nauseum. When I finally had taken all I was going to take on that score, I sat down and wrote my then Rheumy a long letter about how Fat didn't CAUSE SLE, Fat didn't CAUSE RA, Fat didn't CAUSE Lyme Disease, Fat didn't CAUSE anemia, etc. She told me it might be a good idea to find another doctor, so I did. Then, I started getting some answers...primarily that I was right. A life long obesity problem was not responsible for my condition, any more than I was responsible for being obese at the grand old age of four. So, they started looking deeper, and found all sorts of things going on in this poor old bod of mine. It didn't make me happy, by any stretch of the imagination, but it sure did make my feel better about my own judgement and sanity. You have my best thoughts with you at this appointment. Good luck and keep us posted. Hugs, MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 Kate, you are most kindly welcome. It's a frustrating roller coaster ride, that's for sure, this trying to get a diagnosis. Just burns me how many doctors like to blame things on the first obvious thing they see. With me, it was always my weight. Because I didn't lose weight in huge, unplanned amounts it wasn't possible for me to have SLE, Thyroid problems, low BP, Fibro, etc, etc, ad infinitum, ad nauseum. When I finally had taken all I was going to take on that score, I sat down and wrote my then Rheumy a long letter about how Fat didn't CAUSE SLE, Fat didn't CAUSE RA, Fat didn't CAUSE Lyme Disease, Fat didn't CAUSE anemia, etc. She told me it might be a good idea to find another doctor, so I did. Then, I started getting some answers...primarily that I was right. A life long obesity problem was not responsible for my condition, any more than I was responsible for being obese at the grand old age of four. So, they started looking deeper, and found all sorts of things going on in this poor old bod of mine. It didn't make me happy, by any stretch of the imagination, but it sure did make my feel better about my own judgement and sanity. You have my best thoughts with you at this appointment. Good luck and keep us posted. Hugs, MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 Kate, you are most kindly welcome. It's a frustrating roller coaster ride, that's for sure, this trying to get a diagnosis. Just burns me how many doctors like to blame things on the first obvious thing they see. With me, it was always my weight. Because I didn't lose weight in huge, unplanned amounts it wasn't possible for me to have SLE, Thyroid problems, low BP, Fibro, etc, etc, ad infinitum, ad nauseum. When I finally had taken all I was going to take on that score, I sat down and wrote my then Rheumy a long letter about how Fat didn't CAUSE SLE, Fat didn't CAUSE RA, Fat didn't CAUSE Lyme Disease, Fat didn't CAUSE anemia, etc. She told me it might be a good idea to find another doctor, so I did. Then, I started getting some answers...primarily that I was right. A life long obesity problem was not responsible for my condition, any more than I was responsible for being obese at the grand old age of four. So, they started looking deeper, and found all sorts of things going on in this poor old bod of mine. It didn't make me happy, by any stretch of the imagination, but it sure did make my feel better about my own judgement and sanity. You have my best thoughts with you at this appointment. Good luck and keep us posted. Hugs, MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2004 Report Share Posted April 22, 2004 Hi Kate. I live closer to Rochester than Buffalo, but still less than an hour away from Buffalo. Quote Link to comment Share on other sites More sharing options...
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