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Everything posted by briarrose

  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 that no body is really that obligated unless a doctor take you on.
  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.carepages.com/carepages/KristieTunick/patient Please kindly read this story of Las Vegas women Kristie Tunick who experiences life with a body that cannot touch hard surfaces or it paralyzes. At minimum take a moment to at least watch her segment that aired on 20/20 in August 2009. ABC?s 20/20 producers have not followed up on her story and it is so upsetting because she is fighting for her life right now. The segment left off with images of her dream wedding that is planned for her future but instead she is lying in her bed fighting and waiting for a doctor that can save her life. http://abcnews.go.com/Video/playerindex?id=8281604 February 2010 Dear Producers or Doctors, Kristie Tunick and her medical mystery was featured on ABC's 20/20 last fall. Her "love-story" about her once normal life with her fianc? Brian, and her life as a pre-med student turned medical mystery in which physicians thought she had Stiff Person Syndrome. She was medivaced in August 2009 to the Cleveland Clinic to get help for Kristie as the doctors were confident they could ?have her walking out of here in 2-3 months?. However, doctors are not convinced she has SPS and have not been able to diagnose her progressing illness. Kristie's condition is extremely complex because it consists of a rare neuromuscular disease and a autoimmune disease as well as possible caner. As well as many other possible conditions. At this time Kristie is critical and isn't able to get help from a doctor. Her doctor from Cleveland Clinic where she is no longer at is trying to get her to John Hopkins. Mayo Clinic didn't feel they could help in MN and the rare undiagnosed disease program at the NIH turned Kristie down. How does that happen to someone who was on a segment from 20/20 that said "5 Reasons Why to Seek Neurological Help." Yet Kristie can't get any of the top doctors to help her, which is an example of why the medical system needs improvement. Unfortunately, Kristie will have to wait again as she has so many times to find out is she gets into John Hopkins, where Kristie needs to go to stay alive. As she has nowhere else to go at this time. And Kristie is getting worse by the day. Early diagnosis included In 2006 Kristie had her gallbladder removed because she couldn?t stop vomiting, had difficulty swallowing, and feeling of satiety. She later found out at Mayo Clinic, Scottsdale it was from gastroparesis. Kristie has severe gastroparesis, neurocardiogenic syncope, autonomic neuropathy, non epileptic seizures (grand and petite mal) caused by autonomic dysfunction they believe. This all occured before November 2007 when neurological symptoms started. Now Kristie has been diagnosed with small fiber neuropathy, chronic pancytopenia and much more that they do not know what the cause is or how to treat it which makes it dangerous for Kristie. They know she has a rare neurological disease, a possible autoimmune disease which would explain the swelling in her tissues, her Oncolkogist thinks there could be cancer hiding and Kristie has a degenerative disease of the Vertebrae called Sherman?s disease. It is too much for one person too have to endure. Thx steph
  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 is worse the reaction to an immunization or the swine flu. My primary doctor is recommending that I get the H1N1 vaccine. Unfortunate as it might be, I don't think anyone can look into their crystal ball and tell you how you'll fair from the immunization.
  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 pregnancy, unbelievable in fact. I hope all my old friends are doing better and I have missed you guys. Steph
  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 ago, I read an article about a soldier in Iraq. I believe the story went something like this, the first day he was in country he witnessed a person being machined gunned in half. After that image he started having what seemed like panic attacks. He went to his unit commander and complained that he couldn't sleep and he was having all sorts of strange physical symptoms. His superiors tried to placate him by telling him that everyone goes through the same sort of symptoms that he was experiencing. He asked to speak to someone but to no avail. He eventually got sent back to the states, he was told to have a medical evaluation but in fact it was to be disciplined and eventually sent for a court-martial. It seemed so obvious to me that what his mind saw, caused his body to go through some sort of reaction and he was having similar symptoms to that of what Dysautonomia patients experience, but instead of receiving the proper medical & psychological care that he needed, he ended up in jail. I think that story might be in the archives somewhere here on this website. I'm sure that it made me so angry that I posted it and tried to contact someone to try and enlighten them of this poor man's real problem. Who ever said ignorance was bliss? I say, it?s **** on the person that suffers because of another person?s blissful ignorance! OK, had to look, here was the title of my original story ( Military?s version of this, Staff Sgt. Georg-Andreas Pogany) http://dinet.ipbhost.com/index.php?showtopic=931&hl=iraq, It would have been out of character for me to sit by and say nothing in this poor man?s behalf. Sorry off on a tangent but what?s new there Steph
  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 stay awake. Over the years I've come to realize from all the articles I've read & the people that I've talked to, there is very little doubt in my mind that what ever changes in our system can be triggered by many different things physical or psychological (best stated in Chris Caulder?s article at (http://home.att.net/~potsweb/POTS.html). Metaphorically speaking, somewhere in our bodies a circuit goes haywire or breaks, leaving us with this "Dysautonomia." Don?t get too caught up in the when or why because then you have to remember that there are very young children that have been diagnosed with this illness. Whenever I start to veer from reality I remember to go back and catch up on the Dynakid pages, http://www.dynakids.org/ Amy I agree that the TTT isn?t going to be sufficient testing for everyone.
  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 syncope, etc. If you don't know what you're looking at, how do you know to google it? I really hope that more of you guys think about writing in to the editors, doctor's, etc. give your 2 cents. Thx Steph
  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.
  16. Welcome Mark I travel over 2,000 miles to see Dr. Grubb in Toledo, Ohio. He's given me back my life! Steph
  17. Check out the story here, woman in Arizona. http://www.cnn.com/2007/HEALTH/12/06/ep.symptoms/index.html
  18. I don't get to this forum much anymore but was absolutely shocked and sadden to see this post. I loved Mary from Ohio, she was very supportive, informative and just so caring. I will miss her very much. Sincerely Steph
  19. Here are some of the articles I found on your problem http://www.aafp.org/afp/20040315/1417.pdf http://www.emedicine.com/derm/topic916.htm http://www.nlm.nih.gov/medlineplus/ency/article/003247.htm http://www.emedicine.com/derm/byname/muehr...fingernails.htm http://www.biobalancer.com/SelfHelp/Nails.htm happy reading
  20. Ehlers-Danlos, Connective tissue disorder, Auto Immune Dx, Over-active Neurotransmitters, etc. There can be many different reasons. Joint pain was one of my earliest symptoms and most painful complaints. Dr. Grubb started me on Neurontin, at the time it was the first relief I had in 10 years of joint pain.
  21. Mary it will be interesting to see what your doc says. Melanie thx for the suggestions, I hadn't thought of any of those but I especially like the tennis ball idea because we have several here in the house and I can try that right away. I miss talking with you, we should get together soon. Alinvegas, yeah it's like really cold water running down the same part of my leg everytime. Doctorguest, thx I will check into the sciatica angle as this isn't unreasonable to think and better than the possibility of MS. I went to the doc today and he listened to my problems. He didn't really know what the cold/hot sensation was and suggested a neurologist consult down the line. As for the spasms he said I seem to be prone to them and gave me some medication to help me for the next few days and prescribed PT again. Good thing I like my last therapist, she taught me some good lower body mechanics. I appreciate everyones help with this. Thx again. Steph
  22. Ok it's been awhile since I've asked a question and I don't remember this subject being brought up before. These two topics might be unrelated. Last year at times my heel & foot would feel suddenly hot. Recently, just the past 2-3 months, I get the sensation that cold water is running down the back of my right leg. Then over the past 2 days I started having muscle spasms in my mid & upper back, a place where I don't normally experience spasm. It's so bad I can't raise my arm or turn my head. I'm wondering if anyone else has experienced the sensation of warm or cold? Is this related to Dysautonomia or do I have to start thinking MS again? thx guys
  23. Some very interesting responses, thx guys Mel it's good to see you again. I know I haven't been around much this past 6 months as my daughter has been really sick, ontop of everything else. Not sure if I need biofeedback but not closing my mind to it. Just saying that to avoid the POTS roller-coaster I choose to control the emotion that might set off the symptoms, that isn't saying that I don't ever experience them. I would say that days I have to work, I definitely try to control my work atmosphere so I don't struggle as much. Where as when I'm home it's a safe place to let loose.
  24. How many of you guys have learned to control your Adrenaline rushes so well that you are accused or it is assumed that you don't have emotion anymore? When I first was ill with Dysautonomia, any little thing would set off my symptoms. If I got mad, upset, excited, etc. I remember once going to watch something like Indiana Jones in the movie theatre and in one of those edge of your seat type moments I was so excited that my heart took off flying and skipping, after the movie I tried to leave the theatre but didn't even make it to the exit before I dropped to the floor. I had a boyfriend that use to infuriate me so much so that towards the end of our relationship I just started controlling my emotion. Now a new friend of mine who isn't familiar with this illness accuses me of not caring because I don't show emotion, so it has got me thinking, am I the only one who controls their emotion so well that it would seem like we are emotionless? Hope you guys understand what I'm saying here
  25. Ernie Welcome Home! I'm sorry that I haven't been on much these last few months so I wasn't aware of your ordeal. I'm glad that you made it back home and are feeling better. Steph
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