Anybody Have Experiences With Scripps Clinic In La Jolla?

[tachyfor50years]

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!

[corina]

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!

[tachyfor50years]

Thank you dear corina for your concern and support.

[tachyfor50years]

I am still waiting for an answer to my question, please help me if you have been there.

Hugs for all!

[Katybug]

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

[tachyfor50years]

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.

[tachyfor50years]

I Don't know why my doctor referred me to there not to Mayo or Vanderbelt clinic

[sue1234]

If you prefer to go to Mayo or Vandy, can you ask your doctor for a change? I hope something works out for you.

[Chaos]

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.

[tachyfor50years]

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.

[issie]

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

[firewatcher]

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!

[tachyfor50years]

Dear issie,

I am really sorry and I can relate, trust me, my first passing out was 50 years a

go when I was only 4 years old, and for your knowledge the one who found

the right diagnose was ME! (I have been reading and searching about POTS

since year 2000 online and books plus medical journals) yes I told my EP that

I am tired of all the EKGs and pulse been taken only in a supine position, I

asked him to ask the nurse to take my pulse during different positions, he did

but he was not happy! in fact he brushed me off to his partner who got retired

after few months, then I saw a new EP who was not interested at all in my

case, he only loved to do prosedures, he did not even perform my TTT, his PA

did. Long story short! due to living in a small city in midwest, there was no

other EP and I tried 3 neurologists but they did not have a clue! so I went to

the capital of my state which was not a good idea because the Ep there did

not even know what POTS is! so he referred me to that clinic in California

after I cried like never before, I told him here is a dead end for me! he must do

something 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 shoulders

of jiants but nobody knows about my daily sufferings, nobody in my family, no

one at work (Yes I work in a sitting position!) they all know that I am not

normal 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 ordinary

people will understand more than those specialests?!

Thank you firewatcher for your valuble note about the thread.

[issie]

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