← Return to Hormone Replacement Therapy after several misdiagnoses

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My advice is to create a time-line in a note book of all your doctor's visits and doctors contact information. Like a diary. Have all your questions and concerns in writing to make the most of your visit. Then, get copies of every test taken, keep clipped together with a time-line, this will help doctor and avoid re-taking of some tests. You need to benchmark all medications taken, including vitamins. Do this 'before' your next doctor's appointment, including before you get to Mayo clinic. You are lucky, I cannot afford to go to a Mayo clinic location and must rely on primary doctors and a Rhumy that is inexperienced with my rare immune disease. Prednisone was ineffective for me. I found its a standard issue 'first try' drug. Once you go off of it, you need advice on correct diet to lose weight, too much weight can only aggravate joints, not help. It's a double edged sword! I found the best diet for me was the LAC diet, the Keto diet was too much protien and hard to digest for my rare immune disease, and the LowFOD diet helped with digestion, but still did not help with my over-all inflammation. I do believe some of these autoimmune diseases are environmentally triggered, drug induced, and not all clear cut or defined. You may find treatments include holistic things you can do to counter inflammation to minimize damage, once you get a diagnosis..you are doing the right thing to go to Mayo clinic! Good luck!

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Replies to "My advice is to create a time-line in a note book of all your doctor's visits..."

@woolfklynn I will add my support to what @thunder_dog88 says about a time line. I have posted mine on DropBox (https://bit.Ly/1w7j4j8 under Amyloidosis) so anyone can see it. It has really helped be think things thru, and understand how my disorder begins with a single piece of protein, clones itself, then dies. Then it builds and builds, and eventually comes to the point you can really see it for yourself. But the timeline is the key. And keep those discharge papers for proof.