betty32506 Posted October 14, 2008 Share Posted October 14, 2008 38 years ago my little daughter was diagnosed with diabetes. The diagnosis was made by an Ely Lilly doctor when previous doctors just thought I was a neurotic mother. She was later treated by another Lilly doctor. We were military and moved a lot so our association that doctor was only about 1 year. He told me to learn and handle it myself, not to trust any doctor. He was so right. 4 years later we were again near Lilly facilities and we really needed help. Again they were a lifesaver. In all the following years until she was in college and then on her own as an adult has she found a competent doctor. It was a do-it-yourself thing, always in control. She is on a pump overseen by a specialist in a huge Miami clinic. She is still in charge. Now that I am also diabetic I have opted to be followed by a general practitioner that does not claim to be a diabetic doctor. I stick with him because he does not give me grief about things and I am keeping my diabetes in good control. :) That's fine on the subject of diabetes. I know enough to know when the doctor doesn't know. But I now have problems and except for what I find online I know next to nothing. :unsure: The rheumonoglist did not see a problem. Another doctor following me for a lung problem did a lot of test of autoimmune problems. He told me to take the test to the rheumatologist. I did and she looked at them and said she didn't know anything about them and the ONE test she did was negative. :huh: No problems. Back to the lung doctor who said get different rheumatologist and take these records. I did and that doctor seemed to be in the know at least. Diagnosed sclero/lupus and a couple other possibilities. She gave me plaquenil saying have your eye doctor watch this. It did help but after a few months the eye doctor consulted with a retina doctor and said not to take it. Back to the rheumatologist, she seemed personally offended by me stopping the meds. I was having problems with my mouth which I have an ongoing post here on that topic. She dismissed this by ignoring it. I had first gone to the dentist. He saw no problem. This site tells me that is not really an unusual problem. I can handle diabetic related problems but know next to nothing about the problems I am now encountering. It is bad enough that it interferes with my life. So here I aim, licking my wounds (so to speak) except my tongue and mouth are too sore to do that. Now what??????? Betty :blink: Quote Link to post Share on other sites
smac0719 Posted October 14, 2008 Share Posted October 14, 2008 Wow Betty. Sounds like you've had a time of it. Be as dilligent with yourself as you were with your daughter. Because auto immune disorders can be so hard to diagnose, you may go through several doctors. I am on my 5th rhuemo (who I absolutely adore), 4th primary, 2nd dermatologist and now looking for another gastro since my symptoms began. I would not have gone through as many primarys had 2 of them not left practice (no I did not drive them out ;) ). Many of us have had to change and seek doctors who would not only listen, but be advocates for our care. I hope you find one soon that will fit the bill. Quote Link to post Share on other sites
betty32506 Posted October 15, 2008 Share Posted October 15, 2008 I had picked all the brains I could and was well armed for my general practitioner apt. this morning. When I checked in they told me he had just called in sick and I will have to get back to them to make another apt. :huh: I am very careful to consider the time and source of all information I get as it could be dangerous to do otherwise. I search such sites as Mayo clinic as well as forums. Forums tell me what others think and may or may not be valid. When a group has the same experience it is noteworthy. If you do a Google search for diabetes type 3 you will find 3 totally different and conflicting information. Great advances have come in many areas and this is particularly true with diabetes. Not living near my daughter for several years I had not kept up with what was happening. I did not know that type 1 was an autoimmune problem, just that that is what kids get. On line I found that is not good information. When I developed diabetes I knew it at the start. Being 69 it never occurred to me that mine could also be an autoimmune problem. I asked my general practitioner to do the necessary tests and they came back showing mine is an autoimmune problem also. The lung doctor found all these other problems within the same month. I now have at least 4 autoimmune problems and I'm fed up with doctors. DOCTORS are necessary. :blink: Betty Quote Link to post Share on other sites
CraigR Posted October 15, 2008 Share Posted October 15, 2008 I'm lucky to have a rheumatologist who is a wonderful communicator, but I've had to deal with many arrogant doctors.. I usually wonder why they didn't become vets, since they prefer that level of communication with the patient. The Internet affords some sites for rating doctors - good for finding recommendations and posting your experiences, good or bad. Craig Quote Link to post Share on other sites
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