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  1. There are known foods that are inflammatory and many people are sensitive to gluten and dairy without necessarily knowing it. I would rather find out if certain food groups are causing my autoimmune diseases. My niece who has multiple sclerosis has managed to halt and in some areas reverse the disease with diet and alternative medicine. Thank you for your advice - my doctor is very supportive of healing via nutrition. I aim to get off all the Rx I am on as the liver takes a beating processing them.
  2. Hello! I have gastroparesis along with other "gifts" from scleroderma. I am about 12 pounds from a feeding tube so I am asking if anyone with my condition has been successful using the autoimmune protocol and acupuncture. I tried the autoimmune protocol for 10 days but my weight dropped very fast so I had to stop. The doctors put me on Glucerna as a means of fattening me up but that stuff is filled with chemicals and fillers I don't want. The whole point of AIP was to eliminate dairy, gluten, eggs and other things for 30 days or more and then slowly introduce them back one at a time to see if
  3. :emoticons-yes: You all are THE BEST!! Thanks so much for the great advice and encouragement. It was good to have what my local doctor diagnosed validated by scleroderma experts. Does anyone know what a leaky heart valve is? Is this one of those things that most everyone has? That was the only thing of significance that was found on the echocardiogram. I wonder if I am getting too paranoid.... :blink: I am feeling somewhat guilty, almost disappointed that my condition is not worse...how dumb is that? Maybe I am a touch depressed. I will see my primary care physician Tuesday and hope
  4. :happy1-by-lisa-volz: Greetings friends, I have returned from Johns Hopkins today and am pleased to report that, as expected, the care from Dr. Boin was excellent. Most all of my fears are unwarranted with regard to Scleroderma. He confirmed the diagnosis of limited scleroderma and there is no organ involvment as evidenced by PFT, chest x-ray and echo-cardiogram. The doctor conducted a head to toe exam. The esophagitis, diarrhea, reflux do not appear to be connected with the Scleroderma. The doctor felt the fatigue (my worst problem) and brain fog are not from this disease. This is g
  5. I know when urine is dark in color that usually means that your fluid intake is too low. My urine wasn't concentrated...I am starting to feel like a hypochondriac. :emoticon-bang-head: I am soooooooooooo anxious to walk out of the Scleroderma clinic on Tuesday and know what is going on and what the plan of action will be. My eyes are getting crossed from all the reading I've been doing since I am home on short term disability.
  6. :VeryHappy: Hi Patty! I am a former New Yorker!! Moved to VA back in 1987. How's the weather? Thanks for your good wishes and the info on Johns Hopkins. I will see Dr. Boin at Bayview. What is kind of preliminary exam do they do there? Anyone know if red marks, about the size of a pinky tip on the legs mean anything? I had one for a year or more and just noticed a second one. It looks like a lesion whose scab is off but doesn't heal. I've had a rash on my legs for about 4 years but the doctors all dismissed it as a dry skin condition. One more thing, for years on and off I had
  7. Hi Summer, I am curious about your UTI's. Same thing with me - absolutely no symptoms of anything wrong but both the Rheumatologist and Internist (at different times within a few months)said I had a UTI. The second time I took the antibiotics. I have noticed for quite a while (maybe 9 months or so) that my urine has a very strong odor - not the usual odor. Have you noticed anything like that? Are UTI's common with scleroderma? As a rule I don't get UTI's - may have had 2 in my entire 60 years. Thanks :rolleyes:
  8. :yawn: The fatigue is my biggest problem right now. After 4 major surgeries in 4 years and whatever is going on with the Scleroderma, my get up and go, got up and went! Getting more rest now that I am not working is helping but boy oh boy do I feel guilty! I am (or was) one of those A type personalities but now I don't want to do much of anything. I get to feeling kind of spacey - light headed a bit - and I am starting to wonder if I am imagining it or not. No doctors gave me anything for the fatigue - I had been anemic after the last surgery but the extra iron fixed that. Does the Procard
  9. :D Thanks for the warm welcome! Sorry about the long list of events, seems crazy but I think all these things are somehow connected. Thanks for the suggestions about my medical records...needless to say they are huge. I will contact those doctors who have treated me and get the records faxed to Hopkins. Will report back with what I find out. In the meantime, I am having an echo-cardiogram, pulmonary function tests and chest x-ray. I think the doctor has my baseline so I guess they are going to compare? Hopkins wanted the tests done prior to my appointment. My last echo-cardiogram was
  10. I am very happy to have found this forum!! I have read so much on the WWW and it is good to connect with others in the same or similar boat. Okay - here goes my story... About 25 years ago developed Raynaud's in my hands (I was about 34 and a heavy smoker). I quit smoking but no change in the hands. Sometime in 1998 or so, I developed double vision and was referred for a complete work up. Nothing of significance was found except a high ANA which the specialist said to keep an eye on. Started back smoking, quit, started again...The double vision went on for a year or two and finally a Pedia
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