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Hi All,

I wrote to you all back in September, but never summarized, partly because of depression, partly because of no answers and I was waiting to see doctors so I could tell you all  what the result was, then I lost everything in my computer. I did answer each of you who wrote. So here I am again, with sort of a summary, but not really. I originally thought my problem might be whipples desease (my gastro says it would have shown up on the biopsies he did)   Some of you suggested it might be Addison's desease. Here are my symptoms:
Malabsorption of glucose, hyper pigmentation of the skin, tingling and cold numb feeling in the sides of my face, arthritic like pain that is in the muscle (spasm, hip and back),  blurry eyes, swollen eyes, at times dizzy, low blood pressure, headaches that wake me up at night, and always there in the morning, thirsty after eating anything high in carbs, fatigue after eating carbs (even high carb vegies, have never tolerated potatoes well), at one point I had a doctor tell me I was dehydrated like an 80 year old, but did not follow through on that (that was the last time I saw her), pain in the abdomen, an sometimes feel like I have a bladder infection.   

Since going GF it made me feel much better, but I still feel awful most of the time. The good thing about that was the brain fog lifted.

Since I wrote last I have been to my doctor who ordered another glucose tolerance test, with insulin level this time. It came back the same, malabsoption of glucose, and high insulin levels. So, I am overdosed on insulin, and that is what is giving me the diabetic like symptoms. She sent me to an endocrinologist who was sure it was Addison's desease. She did a cortisol test, which came back negative. She ordered more testing. I called my gastro doc, who said "I don't know what it is".  The endocrinologist's last tests came back (for vitimin deficiencies)....all negative. She has given up, and is passing me off to a dermatologist. She says sometimes they can pick up on tumors that other doctors cannot. Ok, now I don't want to hear this, because I am dealing with a brother who has moved in with me because he has melanoma right now. Funny thing is when you get stressed out, with Addison's you can go into a crisis, and I went into a periond of about 2 weeks that I couldn't eat ANYTHING without getting diareah, and extreme tingling and cold numb feeling in the sides of my face. It was when my brother told me he had melanoma. Personally, I think I'd be dead by now, since I have had most of these symptome for 4-5 years now, and going to doctor after doctor, chiropractor after chiropractor, therapist after therapist, and acupuncture. MRI's and ex-rays show nothing. I didn't connect the hyperpigmentation to it (which started at the same time as the pain) until I got the results of the GTT. 
 
My question is, to those of you who have Addison's desease, was it that simple for you to be diagnosed? Where you fasting when you had the Cortisol test done (I wasn't). I am not convinced it isn't Addison's

Are there any doctors out there that can give me a suggestion as to where to go now, since the endocrinologist has given up? She also thinks it could be lyme desease, and she wants me to see someone who is nationally known, who believes Lyme can cause a lot of these symptoms, and he believe's you can have lyme even if the tests are negative. Any suggestions out there?  She had me call my gastro again to have a small bowel follow through, he's a bit sceptical about it. 

I have read about Glucose Intollerance, it's like CD, but you can't absorb glucose. The information I have read says that it is only in infants. Do you suppose it is like CD, where at first they believed only babies had it, and adults have grown out of it? I have always had a problem with sugar. And for those of you who think it may be Candida, I have been on that diet for over 16 years, and it hasn't helped all that much. My diet is now GF, Acid Reflux (Barretts Esophagus), Carb free, Casine Free.  Only thing left is my free range meat, and organic vegies that I can tolerate. I sure would like to add more, if I just knew what. For that matter, I would stick to a diet that was perscribed if I had an answer why I had to do it, but my diet is so limited, I can't take another thing out, I would like to put something back. If I only had to deal with a GF diet I would be in heaven! 

So here I am 3 1/2 months later, and still no answer, with no end in site. It's hurry up and wait. It took 2 months to get the appointment with the endocrinologist (and I think I shoud get another opinion), and it will be  another 2 months before I see the dematologist. Sometimes I think if I just go to the hospital and tell them all the syptoms I have, they would admit me and run the tests, but then, I've had parents go to the hospital and be discharged with no answers. Can you tell I am frustrated? 

Thanks to you all for listening. 
Diana in RI

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