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gelann

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  1. My daughter just moved to Colorado Springs, Co this past week. Her insurance wont start until Sept. 1 but I was wondering if anyone has any suggestions for doctors to understand POTS in this area that they would recommend? Also a gynecologist because she hopes to start a family after they get settled. Usually she actually feels better there because of the high altitude.
  2. My daughter who has been diagnosed with dysautonomia was having problems keeping any food down. She was constantly vomiting and gaining weight. She is now following a gluten free diet and has lost weight and is keeping food down. She always wonders why none of the doctors suggested that she try a gluten free diet. She has stopped vomiting and no longer takes domperidone which was to help her stomach move the food more quickly.
  3. I was wondering if anyone could recommend a family physician and/or POTS physician in the area. My daughter will be moving there in August after she gets married and I am concerned if she can find a doctor who understands the autonomic issues. Thank you, Gelann
  4. I have been reading information on Celiac disease which is gluten sensitvity. Here is a passage of one of the websites. My daughter is avoiding all wheat to see if she feels better. http://www.suite101.com/blog/daisyelaine/g...ity_enteropathy Diagnosing celiac disease is difficult. The usual approach is to order tests for gliadin and tissue transglutaminase (formerly known as endomysial) antibodies and serum IgA levels. However, many physicians fail to order tests for serum IgA levels. Because patients with gluten sensitivity often have low immunoglobulin levels, various antibody tests for IgA autoantibodies will be negative. For this reason, the presence of IgG gliadin antibodies alone in someone with a low IgA level (less than 10) should be referred to a gastroenterologist for further evaluation including intestinal biopsy if indicated. On biopsy, intestinal changes are often seen in people with gluten sensitivity, even when symptoms are mild. The ultimate confirmation for gluten sensitivity, however, is the absence of symptoms after following a gluten-free diet.
  5. I just thought I would pass on this link to a newscast that was shown on WLS-TV in the Chicago area. I live in Michigan but someone in my family saw this and thought the symptoms sounded familiar. Dr. Grubb is also mentioned as one of the top doctors in this field. http://abclocal.go.com/wls/story?section=n...&id=6505198 Gelann
  6. I was just wondering if this has happened to anyone else. My daughter saw Dr. Grubb recently and we received the bill for the office visit and it was a double charge like we had two visits. It was est level 5 visit and prolonged care visit. I called they did not have the notes from the visit but I was told that he can charge more for addtional care. The visit was about an hour. The first time we saw him, it was about an hour but we didnt get charged extra. Last time we got an extra bill from the hospital. She was not sure if I would get one now because he was at the Perrysburg office. Just wondering if anyone else has had this or should we call and question more? Thanks, Gelann
  7. Goodluck Amber, I hope it works out for you the way you want.
  8. My daughters visit with Dr. Grubb was about $200 but there were also hospital charges for the visit which were about $500.00. Total $700 which we had to pay $200 out of pocket.
  9. Hi Randi, My daughter also get huge temperature variations. She can go from 91 to 103 in a very short time. Dr. Grubb told us that the temperature issue is less common than the other issue with POTS. Her autonomic nervous system is affected more than just blood pressure drops. Her main issue are the passing out, digestive problems and temperature control. We were pleased when we finally understood what was going on. Doctors looked for infections when her temperature issues started. Good luck to your daugher. Gelann
  10. Hi Patti, I just want to mention that my daughter Angela,25, has these huge temperature regulation problems. She can go from 93 to 103 occasionally within a very short time. This is all part of the autonomic disregulation. Her temperature problems started back in 1999 and the doctors kept looking for infections. No one understood what was going on until she started passing out a few years ago. At least we know what it is now. When the temperature is low, we try to warm her up with lots of blankets and when it is high she will put on her ice vest from Coolsport. It does help. We now understand from Dr. Grubb that this is one of the less common problems with dysautonomia. They did put her on pindolol to try to help control the temperature fluctuations. They occur less often. I hope she feels better. Gelann
  11. My daughter also has a vest from cool sport. They are adjustable and work great. She would love to get a head scarf but they are always out of stock.
  12. Hello everyone, I was wondering if anyone has ever had a test for IGM.(blood work)my daughter is the patient who has been diagnosed with POTS/dysautonomia. She recently had blood work done and was informed it was very high. They retested her weeks later and it was still high. Years ago when her "symptoms" started and was not diagnosed I remember one of the tests for blood work came back high in the IGM test. The dr. only said that it is a sign of infection. That was the only thing he said. Has anyone else ever had this happen? If so, did you get an explanation? Thanks, Gelann
  13. Hi Christina, I just wanted to mention that my daughter sees Dr. Felix Rogers in Trenton, MI. He is a cardiologist and has helped her quite a bit. He also put her on midodrine but it helps her. Good luck to you.
  14. I just wanted everyone to know that my daughter who contracted the whooping cough at work (A HOSPITAL!) was vaccinated for pertussis and still caught it. There is a new booster vaccine for adults which we have just learned about. She was a new employee at the hospital and her blood tests were tested to see that she was up to date on all vaccines. But it still happened! If you read about whooping cough which I have read so much on it in the last few months. Most adults do not even realize they have whooping cough. In a health adult is is often misdiagnosed as bronchitis as was hers by three different doctors. Her first blood test also came back negative and then the specialist (pulmonary dr.) retested her for whooping cough and confirmed it. Unfortunately with her dysautonomia is is taking an extremely long time to recover.
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