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To BarbaraFrom: Sally (anonymous@obgyn.net)Mon, 28 Jan 2002 04:39:40 -0600 (CST)
Dear Barbara, It must be frustrating knowing that there is something wrong but it not being clear enought (to some of your doctors at least) for them to take you seriously. However, at least your MD is good. However, while I think your endo sounds horrible, I do agree with her that it is easy to get obsessed with our health. I am also totally obsessed - why else spend hours on the internet searching..... and then to try to self diagnose and then panic. FOr example - I was tested as having low calcium. The endo then tested for a hormone called PTH (parathyroid hormone) and mine was very high. So as soon as I got the results and before I saw the endo I looked it up on the internet... all i could find that explained such a finding was kidney failure... I sure was worried. Anyway, I found a site and posted a question, including creatinine and other stuff I had had previously as part of a general checkup. I got answered by a very nice italian doctor who told me that while high PTH can be due to kidney failure (most usually) it can also be due to a problem with vitamin D synthesis/ receptors.....and this is often familial. He said I definitely did not have kidney problem based on the other test results. I can't tell you how releived I was! (Though I will feel even better if my next screening shows that all the kidney function parameters are unchanged - I still have that niggardly little voice in the back of my mind saying what if - but I REFUSE to listen to it for now). Not saying that your symptoms are all like this - but sometimes there are simpler expanations.... However, I also have the internet to thank for giving me the impetus to find a good doctor and find it wasn't all in my head and I wasn't crazy and to start getting treatment and feeling better. Though the last few days I have been pretty rotten - guess we all have times like that and it will pass. The oedema (I also get swollen ankles - varies from time to time - somewhat better at the moment) can also be due to familial traits. I have a sister in law who gets badly swollen legs and ankles. It is a genetic trait in her family - due to a venous defect - many of the women have it..... I think what you need to worry more is if it doesn't go down over night or when you elevate your legs. If you are predisposed to oedema you need to be aware about standing for long periods, using pressure stockings if you are in situation that swelling will increase, be religious about exercising as much as you can (I know this can be difficult for you with your other conditions). You could look up oedema control on the net. While it may be a sign of heart or kidney disease, it may not necessarily be....... OK my advice - for what it is worth - you still need to get on with your life the best you can. You do have one good dr who works with you. Now worst case - if you have something like secondary heart disease what would the treatment/managemetn approach be. In most cases it is dietary and lifestyle. Usually they wouldn't use drugs unless it was very clear..... so even without a 'diagnosis' what can you do for now? Many of these syndrome x and other lifestyle disease things are that - LIFESTYLE DISEASE - so you need to live your life in a way to minimise the risks and complications - even more so when you know you have genetic predisposition... You need to have general checkup annual and at that time they should do a full works blood testing which will detect kidney, cardiac, liver etc. function and monitor them over time. That way, if things are getting worse the will be detected. If there are no major detectable abnormalities - at least whatever it is is not going to kill you immediately - or probably in the near future. We only have one life we need to try to live it the best we can. Best wishes to you barbara.
-- Sally (31 - Australian in the Philippines)
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