tachyfor50years Posted March 20, 2012 Report Posted March 20, 2012 Hi every one!I have a very sad and long story with POTS, It took the doctors 50 years to finally diagnose me, it all started when I was only 5 years old.Just wondering if anyone has been to that clinic for treating POTS, I will see Dr.Thomas Ahern in early April of this year. I will have to stay in the area for a week for possible testing. Any tips or suggestions?Any other details would be much appreciated.Thanks for your responses in advance! Quote
corina Posted March 20, 2012 Report Posted March 20, 2012 hi tachyfor50years!i'm sorry that you had to deal with this for so long, i can't imagine how it must have been like to be ill for so long without any answers. as i'm not from the US i can't help you with your question but hope others can. Welcome to our forum, i hope you'll find the anwers you are looking for! Quote
tachyfor50years Posted March 20, 2012 Author Report Posted March 20, 2012 Thank you dear corina for your concern and support. Quote
tachyfor50years Posted March 21, 2012 Author Report Posted March 21, 2012 I am still waiting for an answer to my question, please help me if you have been there. Hugs for all! Quote
Katybug Posted March 21, 2012 Report Posted March 21, 2012 tachyfor50years,My heart really goes out to you. That puts my 4 1/2 years in perspective. I am so glad you have now found a diagnosis. My best advice is to write/type up all the information about your history and your current symptoms as you can. Include as many notes from past docs and as many lab tests as possible. Create a copy of all of this information for the doctor and one for you to have with you to read off of at the appt. Keep a list of notes, symptoms, questions near you at all time leading up to the appt., so you don't forget all that you want to say. And, my most recent realization is that when I first got my POTS dx, I was happy with the docs trying to treat the symptoms. Now, I have realized that what I really want is to try to track down my root cause and treat that too (I just feel like I am spinning my wheels treating just symptoms.) I can't tell you what to do on this point but just wanted to share my experience on that.Good luck at your appt and let us know how it goes.Katie Quote
tachyfor50years Posted March 22, 2012 Author Report Posted March 22, 2012 Dear Katybug,I really want to thank you for for your response and taking the time to reply to my question,I will take your awesome advice but it will be so hard to do because I have many many test results and never the same. I am still wondering if anybody here on this forum has been to Scripps Clinic In La Jolla.Thank you again. All the best for you. Quote
tachyfor50years Posted March 23, 2012 Author Report Posted March 23, 2012 I Don't know why my doctor referred me to there not to Mayo or Vanderbelt clinic Quote
sue1234 Posted March 23, 2012 Report Posted March 23, 2012 If you prefer to go to Mayo or Vandy, can you ask your doctor for a change? I hope something works out for you. Quote
Chaos Posted March 24, 2012 Report Posted March 24, 2012 I have heard there is also a good autonomic specialist now at Stanford if that's closer for you than any of the Mayos. I think Lemons2lemonade had mentioned that one. Quote
tachyfor50years Posted March 24, 2012 Author Report Posted March 24, 2012 Thank you guys for your responses to my question, I really appreciate your time and efforts.I am still waiting for somebody to give me some impression about that clinic in California, which is the only choice for me because of my health insurance. Quote
issie Posted March 24, 2012 Report Posted March 24, 2012 Sorry, tacky for 50 years - I've had this since I was around 8 was my earliest rememberance and I'm now 52 and was only diagnosied in my late 40's - so I understand your desperation and the struggles that you've gone through to FINALLY get a proper diagnosis. I don't know anything about that clinic - but - just wanted you to know you're not alone with a long history of POTS. It was such a relief to me to finally know what my life has been all about for so long and knowing SOMETHING was wrong - but, not knowing what it was.Issie Quote
firewatcher Posted March 24, 2012 Report Posted March 24, 2012 This sounds like a really good doc. He is mentioned specifically in the "POTS patient in Ironman race" thread on this forum. I haven't seen him myself, but the woman in the article was highly complimentary.Good luck! Quote
tachyfor50years Posted March 25, 2012 Author Report Posted March 25, 2012 Dear issie,I am really sorry and I can relate, trust me, my first passing out was 50 years ago when I was only 4 years old, and for your knowledge the one who foundthe right diagnose was ME! (I have been reading and searching about POTSsince year 2000 online and books plus medical journals) yes I told my EP thatI am tired of all the EKGs and pulse been taken only in a supine position, Iasked him to ask the nurse to take my pulse during different positions, he didbut he was not happy! in fact he brushed me off to his partner who got retiredafter few months, then I saw a new EP who was not interested at all in mycase, he only loved to do prosedures, he did not even perform my TTT, his PAdid. Long story short! due to living in a small city in midwest, there was noother EP and I tried 3 neurologists but they did not have a clue! so I went tothe capital of my state which was not a good idea because the Ep there didnot even know what POTS is! so he referred me to that clinic in Californiaafter I cried like never before, I told him here is a dead end for me! he must dosomething about my case, I have been suffering in silence all my life.For half a century I have been through a lot of pain, walked on the shouldersof jiants but nobody knows about my daily sufferings, nobody in my family, noone at work (Yes I work in a sitting position!) they all know that I am notnormal like them but they have no clue whatsoever, I don't blame them, EPs,neurologists did not know about my condition, so why would I expect ordinarypeople will understand more than those specialests?!Thank you firewatcher for your valuble note about the thread. Quote
issie Posted March 25, 2012 Report Posted March 25, 2012 Tackyfor 50 years,I can so relate. I'm not one to talk to my friends that much either about how I am and really that much about what's wrong with me. They know the word POTS but, until this Changes video went public - they really didn't know that much about it. Some of my friends did do searches on the internet - but, told me after watching the video that what they had found didn't make the impact that the video did. They felt like they understood a whole lot more. I sent it to those that I thought would look at it and those who I felt cared the most for me. It has really opened up more dialouge for me about it - plus, I think it spreads awareness more.It's funny the first time I ever heard the word POTS is one of my nephews married a girl that got diagnoised with it. When I talked to her about her symptoms - it seemed to fit me. At the time, I had been diagnoised with parkinsons' and it just didn't fit and the medicine was making me worse. That's when I went to Mayo and got the correct diagnosis. So many years of chasing answers - finally felt like I had pieces of the puzzle that fit together properly. Even though I now know what is wrong - I would be one of the hardest subsets to treat and I really haven't gotten any relief from my symptoms. Medicines have not been sucessful - so far. I am playing around with some natural things that work like certain medicines, right now. So, hoping I'll hit on the right combination.I'm glad you finally got your DX and hope that you will find the right treatment very soon and feel better.Issie Quote
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