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briarrose

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About briarrose

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  1. It's been along time since I've posted anything but my husband found this article quite interesting. I thought of past stories that I've read here, so I wanted to share. I'm sorry that I can't cut and paste but you can go to CNN and search Bubble Girl is Allergic to life. This young lady was diagnosed with multiple things before they came up with what they feel is her true diagnosis. Here is a list of other dx - Gastroparesis, IBS, Partial paralysis of the stomach muscle, POTS, Ehlers-Danlos syndrome, etc. They feel confident that her real problem was Mast Cell Disease.
  2. Thank you everyone for your responses. I know first hand that when you become ill, it can be a lonely & frustrating place. Knowing where I was at one time, makes me what to pay attention to others who need help or advocators. Tearose, it?s been a long time, thanks for your welcome. I will be cutting & pasting all of your suggestions to Kristi. Hopefully something pans out for her. As for going to the ED. I worked in an emergency room for several years & their job is to make sure that you aren?t dying. They can give you a 1 time referral to follow up with someone but beyond
  3. Hey guys Been a very long time since I've posted here. (I know this is going to be overwhelming for some to read, it was for me.) I tried to break some of it down. I recently saw this story on the news and am passing it on to any of you that might be able to help. Check it out and let me know what you think. So many symptoms, I'm sure dysautonomia but caused by what??? Paralysis, edema, inability to void, etc. http://www.8newsnow.com/story/13481444/henderson-womans-plea-for-help-goes-viral You can see her complete saga but think you have to join this free website to read it. http://www.car
  4. I'm looking for a Autonomic doc in Las Vegas, any suggestions? thx
  5. In late October 2001 I received the influenza vaccine because I work in a hospital. Within hours I started having a reaction and several symptoms from that shot. Within in a few weeks I was hospitalized with tachycarida and a few months later I was diagnosed with POTS. I reported my initial outcome to VAERS. Beware that the H1N1 vaccine has the preservative Thimersol unless you live in the state of Washington where it is illegal to give to young children and pregnant women. You can request the H1N1 vaccine thimersol free immunization. On the other hand, because you already have POTS, what
  6. They are the same thing, just different names. Procrit, epoetin alfa, Erythropetin, Aranesp
  7. Tearose Sorry, I'm good and am still taking Epogen. Think I've been taking the injections for about 7 years now, along with IV Iron. These are the 2 drugs that have almost returned me to a normal person. Thx Steph
  8. Dancing Light, hope you're still out there Thanks for inquiring. Sorry it took 2+ years to get back to you. I'm doing much better and after a few years of agonizing ****, I would consider myself very fortunate to have some great treatments and supporting doctors, special thanks to Dr. Grubb as I would definitely not be this normal without him and his game plans. I kind of dropped off the board because my life was very, very busy and I am able to control my POTS now, 99 percent of the time. I have a wondeful 1 1/2 year old, little boy that is my biggest life change I had the worst pregna
  9. Karyn sorry, been away for awhile. When you want to add a link, you can highlight the www. address, copy and paste it. http://www.neurology.org/cgi/eletters/58/3/422?ck=nck
  10. Mark My screen name is one of my favorite Disney chars and back when I first got sick, I found humor in her name. I certainly wasn't going to name myself sleeping beauty LOL Sorry, I'm not well read enough to know about Jane Yolen. Disappointing as it is, time I've never been able to appreciate, probably due to the fact that I had six children right out of high school & worked either at home or earning a wage. Thank you for asking what my opinion is, truly refreshing. Stress - I'm pretty sure you're on to something and let me try to relate to what you said. A couple of years
  11. I'm pretty rusty in my thoughts & writings; it's been such a long time since I did this on a regular basis. Mark I hope that you don't think that I'm advocating for the military because I was just trying to bring to light the similarities and the fact that the military doctor's seemed best at recognizing the symptoms, even if they didn't realize what they were looking at or why. I'm not sure that the soldiers that were diagnosed were suffering from a psychological condition back then; I was thinking it had to do with their rigorous physical activity, long hours of standing and having to
  12. Isn't it strange that she would have Chiari, especially after her dad was misdiagnosed with Shy-Drager.
  13. Amy I hope that you read this post since I thought of it again when I was catching up on the "new kid on the block" discussion.
  14. Wondering if there is something more we can do here, seriously. Karyn is right, I tried to post a comment too but they weren't accepting anymore. I did send an email to the editor but you never know if they are read. Nina you're pretty could at brainstorming, isn't there a way we can get them to continue this story and even help that poor woman out, not to mention all the other readers that probably could relate to those problems. Lisa Good to drop in again, thx for noticing me Sophia I doubt those doctor's are aware of Dysautonomia, Orthostatic Hypotension, POTS, Neurocardiogenic synco
  15. I noticed that too and was trying to find a way to communicate that to CNN, Dr. Gazelle, Elizabeth Cohen; anyone that can help push that poor woman into the right direction for help.
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