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About KayBear

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    Idaho Falls,Idaho
  1. Hello everyone, It has been a while for me since I posted. I have found all of your advice so helpful so I am back for more. Hope you all can help.I waited 3 months to see the rheumatologist and was hoping for too much I guess. i was diagnosed positive with the screening for CREST we thought it was finally anwsers to alot of unanwsered questions.But at the first appt today he looked at me and checked my joints and then said I needed 3 tests an EKG, Berium swallow, and a lung capasity test. I understand all of that but he seems to think because my family has a history of auto immune disorders that I don't have CREST being active but I have all of the factors according to my regular doctor. I have the constant heartburn and trouble swallowing at times the heartburn is under control with meds. He said I did have the dicoloration in my fingers and toes due to cold(rhynauds) only he didn't call it that.I have had two deposits removed they never did say what they were they just said calcified deposits this has been in the last 4 years. i have the red splotches on my cheeks they never go away. one good thing I never need BLUSH.HAHA sometimes I get it in patches on my chest and stomach but it usually goes away after a long while. There is more buut I am sure you all get the idea where this is going. My question is can you have CREST without having outside skin involvement? He looked at my skin and said there was no thickening of the skin so CREST proably was not what I have.He said you can have the positive screening and the disease never becomes active he told us that you could look at a person and see they have CREST because of the skin, so that proably wasn't my problem.Please HELP!!!! he seemed to think that having the LAPBAND surgery would get rid of the sore muscles and joints, and it would help my sleep and give me more energy and that I need a vacation from my daycare.This was his anwser. I am overweight I weigh 232 I know that is part of it but not all of it.Iknow losing weight would be great but its hard I have tried my whole life. Even when I did PHEN/PHEN I only got down to 176 and that was on a 900 calorie diet with almost no cheating and daily workouts. I am so frustrated after today that I am ready to say forget it all and just scream. Sorry to be so talkative but I am hoping you all can help anwser a few questions because his anwser is lose weight and it will go away. If it was that easy I would have done it years ago. I get the impression he thinks I am a quack and donesn't know anything. He talked about the limited CREST but never mentioned ther is two strains limited and diffused. Please Help!!!!!!
  2. Hey thank you all for your support and advice. I finally was able to get an appt. with the rhumatoid doctor its not until January 31st but we are on the cancellation list so we will just wait and see. What is sed rate can anyone tell me I went to my doctor yesterday and she said my sed rate was high but other than that everything was like she liked to see it. She said she woould keep my symptoms under control until my consult in January. It's been great getting to hear from all of you and your positive outlooks.THANK YOU ALL!!! i LOOK FORWARD TO GETTING TO KNOW ALL OF YOU BETTER. BE BLESSED
  3. THANK YOU ALL!!!!!!!!!!! since finding out about my diagnosis last week last night was the first night I actually slept all of your support and advice has really helped to understand and deal with this.I am grateful for all your help I go to the doctor monday and I actually feel like I can face her and not blame her for finding it.Up until finding this support group and all of you great people I was thinking IGNORANCE WAS BLISS now I am looking at it from the point of view that I can catch the little things and know how to face it and hopefully keep it from getting worse due to my lifestyle now I see that it is a wake up call to change and accept, what I can and due all I can for myself.AND ACCEPT WHAT I CAN'T CHANGE I CAN'T CONTROL EVERYTHING.be talking with you all later. :D :P
  4. thank you all so much I m starting to calm down now the more I research it seems as though mine might bevery minimal I don not that I can see have any skin involvement,i do have the heartburn and some circulation problems but that could be due to my diabetes my doctor seems to think mine is all in my veins and blood vessels if that is possible the hard part is I am stressing myself out thinking the worst and dwelling on the could be's now that it is starting to make more sense I am starting slowly to adjust thank you all so much again I will definitley be more at ease the more I find out and learn and hearing from all of you that it is livable and not a death sentence as the doctors have made it sound sorry for the typing I can only do so much I found out at 26 that I am going blind due to a genetic disorder and my eyes tire quick so I don't spend alot of time with capitals and punctuatiion thank you again
  5. Thank you to those that replied I don't feel quite as nervous; it's reassuring to know that others are going through this too. It makes it easier to face knowing that there is support out there and people to help answer the unknown for now, we will wait to see what the future brings. After seeing the initial websites I figured life was over but thank you all for your reassurance. CREST can be managed and liveable; the doctors paint a different picture. Thank you all Kaybear
  6. I am 33 and just tested positive for crest syndrome in my bloodwork I have been reading and getting more and more scared. I don't seem to have any noticable skin problems; my finger and toes are cold alot but with no discoloration. I do have heartburn a lot and am on meds it seems to control it good. I have some red patches on my upper cheek bones I always just thought it was being flushed I never thought it could be something more. Are all the things I am reading going to happen or can it be mild and never get any worse and can you have crest and never show signs of the disease? Please someone help settle my fears, I cannot get into the rheumatoid doctor for 5 months. I do not want to be this scared for the next 5 months. Thanks Kaybear
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