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Everything posted by crowebirds

  1. I am very curious about your signature. You show that you have cholinergic urticaria and dermatographism. Have you been able to identify a link between those two and your DYS? My daughter also has Cholinergic urticiara and dermatographism, she also has a severe case of cold induced urticaria. Her immunologist believes that they are related. Thanks, Robin
  2. We had a really good appt. This is the first that we didn't spend an hour explaining everything about TLC's issues; I had a list of symptoms which he referred to. He didn't attempt to challenge my intelligence like previous Neuro did. He said that all of her symptoms pointed to the same thing which is damage to her Autonomic Nervous system. He believes that it is not genetic and that it is from damage somewhere along the pathway. It is affecting the entire autonomic system so it has to be close to her brain. He said that it is similar to RSD-Dystonia, but said that it is not muscular. He thinks that she needs a type of therapy which will numb her to some of the pain. If it works, it will help reduce her heart rate which in turn will make it possible to go off of her heart med and change to a pain med instead. He is going to have her do a sleep study because she is so tired all the time. He will also do some other tests to see if she has something called Porphyria and Heavy Metal poisoning. He wants to rule them out. He will see her again in four months after all the tests are done. He also said that she does need to go to the Mayo clinic in Minnesota for more specialized testing. He said that they would be able to find the exact location of the damage. Whew, finally! Robin
  3. My daughter has not had an official TTT as of yet, but your description of what happened sounds just like what she goes through on a daily basis when she stands up too long (5-10 minutes). I am so glad you were able to get answers.
  4. My daughter got this when going on Propranolol, it was attributed to less pressure on the legs as the blood pressure was reduced. If you have a blood pressure monitor, you can take your blood pressure from your ankle. Don't get scared when you do, the difference from a leg pressure and arm pressure can vary widely. Take several measurements when you are at rest, legs up and rested and several when standing and you feel like your "normal" and during several of the jelly attacks both standing and after laying down with legs up. You will be able to compare the totals and see if it is your blood pressure in the legs. Though her blood pressure in the arm is on the very low side of normal, her standing pressure in her ankles are very high. She has blood pooling in her arms and legs when standing. Robin
  5. Julie - Thank you for keeping an eye out for me and letting me know this was out here. We will have to go to the doctor here soon anyhow, because the one drug that works for TLC is too strong. This will be perfect timing to bring this up. When I looked more into detail about the class of the drug and the other drugs that fall in the same class is like a big WOW moment. TLC has always responded well to Albuterol during an attack even though she does not have asthma and has always responded well while taking Robitussin CF when she has cold symptoms. Both have impacted not only what they were to treat, but the "refractory" CICU as well. Thank you, Robin
  6. I started a detailed search into the connection between MCAD and Connective Tissue Disorders. Even when looking at some of the most basic principles of Connective Tissue, Mast Cells and POTS, you begin to find a very simplified connection. It did not take me long to find that Mast Cells are made up of Connective Tissue Cells. "Mast cells are - like macrophages, lymphocytes and eosinophils - in demand when something goes wrong in the connective tissue. " http://www.lab.anhb.uwa.edu.au/mb140/corepages/connective/connect.htm MCAD triggers a loss of fluid into the surrounding tissues. This fluid loss leads to low blood volume which can lead to at least one form of POTS. You don't always have the advantage of seeing the fluid loss as some reactions are in the internal structures. "Hives are produced by blood plasma leaking through tiny gaps between the cells lining small blood vessels in the skin. Histamine is a chemical released from cells in the skin called "mast cells," which lie along blood vessels." http://www.aad.org/public/publications/pamphlets/skin_urticaria.html I also found a connection between MCAD causing an andrenergic rush which would also be related to POTS. Sorry, I don't currently have that link. Still researching. From an overly simplified perspective, it could very well turn out that this is all a new connective tissue disorder.
  7. Sodium causes fluid retention, if you have salt wasting and/or low blood volume, then yes this will help. Of course it works in tandem with consumption of extra fluids. My daughter consumes two Gatorades a day to help with her salt wasting.
  8. Unless you feel really comfortable that the job is yours or that it would benefit you to reveal in advance, don't reveal any information until after you are hired. Employers are required to provide reasonable accommodations for those with disabilities. And to prevent discrimination, you are not required to reveal any information before being hired. However, before accepting a job offer be sure that the company would be able to accommodate your needs with out causing a great burden on the their finances and their staff. My prayers are with you that you are blessed with a wonderful job that will work with you. Robin
  9. She doesn't have any scarring, just stretch marks (striae). She is also a member of DYNAKIDS. Thank you, those are great resources.
  10. According to my family physician, most women are deficient. I am the same that I get plenty of sun and a bowl of milk every morning. He said that for me it is not about getting too little, but not being able to synthesize the vitamin D.
  11. Thanks everyone I am going to start contacting these doctors, sending them her file and see if any one of them feel like they can work with her. Since early on I have had the practice of telling the doctor everything that she has wrong with her just in case they are all related. He thinks that I am being too sensitive and trying to make everything into something. The one that I never made a big deal about is the stretch marks and the double jointedness and loose joints. Her ankles have almost no flexibility yet her arms, wrists and fingers are circus tricks unto themselves. We will be looking at the best time to go out of state since it will most likely be out of pocket and we have already exhausted our savings. Again, thanks to everyone for your support. Robin
  12. TLC is 12 years old and we live in Alabama. Yes, we are looking for DYS specialist. She was just diagnosed this year with DYS because she doesn't sweat, no other tests were taken. After going home and researching what DYS was and doing my own home tests, I believe that the diagnosis fits, she also has blood pooling in her lower half which includes her arms, has tachycardia when standing and has to use a wheelchair because of the pain involved when standing. There are other issues involved as well (many). She also has been diagnosed for several years with cold induced urticaria. We have been told by one cardiologist that he could not help her because he believes the two are related and has given us a referral to the Mayo clinic. Now a second cardio/DYS doctor has done the same thing. We must assume for the same reasons.
  13. What a shame. Was told that there was nothing he could do for her and that we needed to go to Vandy or Mayo in MN. No definitive reasons as to why he can't help her. He won't even do tilt table testing. Sadly, Vandy which is closest won't see her unless there is a research program for kids her age. Mayo will have to wait until next summer. Everyone please pray, I am almost to the point of parking in a waiting room somewhere until someone sees her. I just can't believe that her issues are too complicated for a DYS specialist. Very broken hearted for her.
  14. I found some information tonight which may be useful. visit: http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WN2-4C0CYF1-JY&_user=10&_coverDate=12%2F31%2F1982&_rdoc=1&_fmt=high&_orig=search&_origin=search&_sort=d&_docanchor=&view=c&_searchStrId=1520647559&_rerunOrigin=google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=fdb516f0d0ba0f8e5f997cb629c9882a&searchtype=a "The role of the CNS in the pathophysiology of urticaria has, historically, been almost totally neglected. The concept of the urticarias as ?neurovascular disorders? is not a new one, and was first proposed at the turn of the century." and, also visit google books and search for On diseases of the Skin: A System of Cutaneous Medicine by Sir Erasmus Wilson. Go to page 244. It makes the following statements, "Urticaria is a neropathic affections." "May exist in any organ supplied w/sympathetic nerves." "The proximate cause of urticaria is an irritation of the nerves of the skin." "As a predisposing cause, we have detected the presence of debility, generally of the assimilative and sometimes as the nervous kind." This book was published in 1868.
  15. Hey Blue! I know what you are going through and I am glad that you do not have to live by the antihistamines on a daily basis. We don't know all of my daughter's triggers, but we do know that cold temps, water, air, etc. leads to anaphylaxis. Sarah I do need to apologize because I miss spoke earlier. Doctors are not trying to tie together MCAS/D but they are trying to tie together Chronic Urticaria and DYS. We do not have any research, but my daughter's doctor had made this statement to us. Based on this, he referred her to the Mayo Clinic in Minnesota. Of course, we can't go until it is summer (warm) again. Sorry, I was doing a lot of research on MCAS/D prior to coming to this site. Her reactions may end up fitting within this model, we will see what the World Health Order has to say about that. Her Immunologist believes that because she has two very rare conditions (Generalized Cold Reflex Urticaria and POTS) that they must be secondary to another umbrella condition. He thinks that it may have something to do with Mitochondria in the cells. I can tell you that Mack's Mom, Julie, has a lot of research information on MCAS/D.
  16. Welcome to the world of Hives. It sounds like cholinergic urticaria. Researchers are currently trying to figure out the connection between MCAS/D and Dysautonomia. As long as you are not anaphylactic and don't have any itching, you won't need much in the way of treatment. Just try taking cooler showers, minimize exposure to extreme heat and outdoor exposure. My daughter has severe, chronic urticaria and angioedema. She has cold induced urticaria, cholinergic urticaria, andrenergic urticaria, dermatographism and angioedema. She also has POTS. Her urticaria is extremely itchy and it burns and will quickly take her into shock. She has been anaphylactic three times. She is now on three antihistamines and one inhaler to control her reativity. She still has major reactions on all these meds, but not as bad without them. Unlike urticaria, angioedema does not itch, but it will last beyond 24 hours and will leave scars behind in the deep tissues. Good luck figuring it all out.
  17. Lissy, I will be praying for you. My heart pours out for you and your children in this difficult situation. My mother went through the same thing when my brother and I were little. Julie is right that there are resources out there waiting to help you. Let me give you encouragement. This may be a tough transition for you, but see it as writing a book, a new chapter in your life. With God's help, you get to decide what is next. You may have some stumbles along the way, but that is ok. You will be better and stronger in the end. The children will grow up strong and and much happier. Also, try to find a medium to large church in your area. It is a place for comfort and solace, a place for learning and growth. They too have resources that will be beneficial as you get back on your feet. Remember that God will not always remove the storms from our paths, but He will guide His children through the storm. The end result will always be rewarding. I will be praying for you! In God's love, Robin
  18. Oh, Julie, This is so much information to take in at once. I finally had the time to sit down and do the research, I even found the research that I was looking for on the WHO site as well as the American Heart Association and other credible research sites. I sent off my daughter's records today to the new specialist only an hour away from us. There is a chance that she can be seen by him in November. I hope and pray that she will be seen. I can share this information with him and the Immunologist. On the AHA website I found an article on "Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders". It seems so spot on for my daughter's health problems, and it ties both the urticaria and POTs together. It will be so nice some day when someone asks me what is wrong with my daughter, I can tell them. Instead of giving them a laundry list of diagnoses, my new answer will be short and to the point. Blessings, Robin
  19. I am on the forum because my daughter has POTS. However, I have a Vit D deficiency and I don't have POTS. I take 50,000 IU twice weekly. In the first few months, I had to take an additional 20,000 on a daily basis. Yes, it can make you feel fatigued, very much so. However, the worst symptoms come from the bone pain and popping. You really feel like an arthritic 80 year old. When taking it regularly, you don't get a euphoric "I feel good" symdrome, you just feel normal. However BIG WARNING, DO NOT self medicate on VIT D, It CAN/WILL KILL YOU! It is easy to overdose even on a daily dose of 2,000 IU. Get checked by a doctor before you start taking more than 1,000IU a day. If your body needs it you won't get sick, but if it does not need it, you will get sick.
  20. Though TLC has not been given any additional meds for the migraines because of her sensitivities to meds, her immunology specialist put her Propanalol to help moderate her heart. After reading up on it, I found out that it is also used to treat Migraines. So far, it is working very well. She no longer has migraines everyday, so far about once a week. This is only her third week being on it. But I can tell that not only have the migraines and headaches been under control, but she has displayed a little bit more energy in the things that she does. She even has tried going back into phys ed at school, on a very minimal workout schedule (walking and stretching only). The first day she was okay, but the next day she had a light crash. This is the first sign of improvement from the DYS I have seen in a couple years. I know it won't last, but it is nice to see it.
  21. The results were normal for both tests that were done. According to the nurse this means no myopathies or neuropathies. Thanks, Robin
  22. Okay, only God gets credit for this. Several people I know found an article about a lady in our area who has lived with one of the most severe forms of DYS. In talking with her online, we were able to find a doctor that will diagnose/treat children. I made contact with them and they are interested in seeing her. They will review her records and determine at that point if she will be accepted as a new patient. If she is, she can get an appointment as early as next month. Please keep her in your prayers that she will be accepted.
  23. My husband has a pacemaker for reasons not related to DYS. I can answer some of your questions, but not all. #2. Pacemakers are for Bradycardia; however, if you are given medicine to lower your heart rate for the occassions it gets too high and you have periods where your heart rate in its resting state is too low, it may be necessary to have a pacemaker that will keep you from going too low. #5. Pacemakers carry a risk; however, the greatest risk not from the use of one, but the implantation of one. Go to YouTube and search for Discovery Channel Dysautonomia. The show that they did involves a lady that eventually had a pacemaker to stabilizer her and keep her from passing out. The show is broken down into two or three videos on YouTube, be sure to watch them all.
  24. Thank you! Getting up, brushing off, remaining faithful.
  25. Doctor's nurse called today and gave us the test results from our last visit, all were normal. Then she said to cancel the follow up appointment, there was nothing more he could do for her. :0( We are still waiting to see another neurologist at UAB and will ask to see a geneticist. Here we go starting over. So frustrating.
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