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About Clb75

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  1. Welcome new members as of 11/13/17. We hope this is a helpful resource for you. Please feel free to post an introduction or on a topic of interest to you. odontoid Les Barbara Floyd Gorica Lukic Dhughes Synne Ailsa D floating Shawna Kelley B dbp19 js_langy Angiesemi JAL Madison3 Kenneth W Loxodonta Darren M
  2. I can imagine that medical resources are limited given the ongoing conflict in Yemen where you are. Have you thought about the international red crescent society? They have doctors on staff and may be able to contact someone by phone in a different country on your behalf. Are you able to access a general doctor? They may have some ideas on how to contact others as well. Good luck, I hope you’re able to find some resources.
  3. I have a port, and they use a needle to access it. It’s only one stick but it may still bother you. Plus it requires surgery to get it placed. It may be a solution if you need a lot of blood drawn on a regular basis, but if it’s on an infrequent basis, surgery to place it then again to remove it may be a lot to go through.
  4. Welcome new members as of 11/06. We hope this is a helpful resource for you. Please feel free to post an introduction or on a topic that you’re interested in. SpeedyMarie Dysautonomia Hippopotsamus Teresa LeChat Gemini Petunia STAN Cristie Margaret Jennifer Diego Kate Kate Gatorgirl Yvonne E Shauna willofgodis4me Lisa F Rickymac02 TiredTommy Lin LisaA440 Long3030 27 Elephants Tammy Elizabeth Kim51283 Julianne Karan Carrli
  5. Welcome new members!

    Welcome, glad you found the site.
  6. I remember you were trying to get to the doctor but had insurance issues. Were you able to go? If not, you really need a diagnosis and good treatment plan. Pots will not likely go away on its own, and it’s possible with the right treatment that some of your symptoms could improve. The ER will not diagnose you with Pots, they are there to treat any life threatening problems. Pots is annoying but not fatal. If you really think you have Pots, you need a tilt table test from an electrophysiologist (cardiologist) or a neurologist who specializes in autonomic disorders. You can keep track of your heart rate, lying, sitting and standing and record the numbers. This is data to give to the doctor and can help show a pattern of symptoms. As far as the health anxiety, it sounds like you’re in a big loop of having symptoms that cause worry, then going to the ER to make sure you’re ok. This is not going to change anything unfortunately. Getting a treatment plan tailored to your symptoms is the only way you will know if any improvement is possible. Even though your symptoms are bothering you, it sounds like you’re able to make it through a day at work which points to a milder case if it is Pots. Hopefully improvements will be possible for you. Some people benefit from ssri’s...not sure what they prescribed you at the hospital but if it’s an Ssri, that may be helpful too.
  7. Turning Yellow/Orange

    Are you taking any vitamins? An overdose of vitamins can cause skin color changes and confusion.
  8. Welcome new members as of 11/03! We hope this is a helpful resource for you. Please feel free to post an introduction or on a topic that you’re interested in. Hershey Margaret N nicoldest debc Reid F Irunwithscissors Alexandra
  9. Welcome new members as of 10/23/17. We hope this is a helpful resource for you. Please feel free to post an introduction or on a topic that you’re interested in. Halkur S Ryan C lynni Melissa7011 Julia P Kathlyn47 John K Janine Jake Donna K Debora J Linda Tami S Jayne the Daily Maniac Sea-poet Jonna shasta43 lpert Emma33 Katherine G Carla Mad96 Sam123 kimmedawn JP0324 Elastagirl17 Tiz tighidden JaydenD broncomom3 Selmaanna Traci L Alexisleann Gamoore14 KariDK MissyB Madisonjan7 Barbara G JojoR Maureen H Deb webb orion Tee Marie tallgirl509 Paige_B Christy R ShelleyE D Carson LynnB
  10. I had a doctor tell me that shortness of breath happens because blood is not getting to the upper parts of our bodies, including the brain and lungs.
  11. disability process

    I went through the disability process a few years ago. I would definitely stay on top of the lawyer because there is a time limit for appealing after your denial. They can close the case if it’s not done on time. I think it’s a good idea to ask your retired doctor if they would fill out the papers since they saw you last and are most familiar with your case. It will help to have an appointment scheduled with a new doctor because you need to show you are receiving consistent care. There are some law firms that specialize in disability cases but operate more like a factory, they get your information, send forms out etc but won’t let you talk to or meet with the actual lawyer. I went with one who met with me in person. He did a quick screening over the phone to see if he thought he could help me, then met with me from there. If you’re not getting calls back, I would keep searching. I wouldn’t try to go through the process without legal help because it’s too complicated. It’s a stressful process, I hope you find the support you need.
  12. trying to wean off florinef

    Nathalie, I’m not sure if your doctor is familiar with this, but florinef is a different type of steroid than conventional ones. They are classed as a mineralcorticoid instead of a glucocorticoid, and don’t cause many of the side effects seen in traditional long term steroid use. Maybe this would change their mind about needing to wean you off.
  13. Welcome new members! We hope this is a helpful resource for you. Please feel free to post an introduction or on a topic you’re interested in. girl BetsyMH Daniel B Casper Tyner L MPurlz Shar Big Guy JuliaB Kate ayx Leah Ann D Pey_Beas Exaclee Pan Valentina H tonim Linda B Michelle K CJB
  14. Welcome new members as of 10/16. We hope this is a helpful resource for you. Please feel free to post an introduction or on a topic that you're interested in. Jemima malika elmoouddn Kylie Karenatalie Leah W. Nathalie tamara j Stephiej DanS66 Rocio H. Julia Christylou Leisk Serenapuff Princessr2002 Family with Dysautonomia lindsay.sparkles Chrisk Howard Ryan B. Carolyn R. Daria L. Abster Kapstun darndt56 Hannaheg14 Simba1066
  15. POTs and mobility

    Does your university or public transportation system have a paratransit system for people with disabilities? If so, they may be able to pick you up directly and shuttle you to your classes. In the town I live in, the paratransit will pick you up at your home, school, work etc. as long as it's a certain distance from their regular route.