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Welcome to my blog.

My goal is to help provide EDS & Dysautonomia patients with resources to discuss with their healthcare team.

Specialist...or lack thereof

Specialist...or lack thereof

I moved to San Diego 1 year ago (as of today), I still do not have a Dysautonomia or Ehlers Danlos Syndrome specialist. There is 1 cardiologist that specializes in POTS within my network and he isn’t currently accepting new patients. 

So I decided to try a neurology team (because that’s who I saw back home). I called in and the scheduler told me that there isn’t anyone in neurology that accepts POTS patients and that I would need to find a cardiologist. After that phone call, I gave up on trying to find a specialist. My PCP is currently following and refilling the prescriptions from my specialist team back home, so there isn’t really a need to find a specialist. And the last time I had a cardiologist (in Wisconsin) coordinating my medication, they put me on Metoprolol and Flornef…which tanked my blood pressure and caused me to literally throw up my medication from the spike in my nausea symptoms.

About 2 months later, I got a call from neurology telling me that my referral was about to expire. I explained my situation and that I was looking for a POTS specialist. The scheduler (a different one than before) told me that wouldn’t be a problem and gave me two different neurologists that he said treated POTS. I called and made an appointment for about 2 months later. 

*Fast forward 2 months* I arrive for my appointment, fill out the paperwork, and am quickly taken back by the nurse to wait for the neurologist. 

The nurse asked me the usual questions for 1st time patients. But I knew something was odd about the visit when he only took my blood pressure from a seated position. Every time I went to my specialist in Wisconsin, they took my blood pressure after I had been lying down for 10 minutes... and then standing (once every 2 minutes or so for 10 minutes). He then proceeded to argue with me about vaping (ecig with nicotine) and told me all about its possible harmful effects. I felt like I was being scolded by my parents. I wasn’t going to try and argue with him any further because anytime I brought up scientific studies (The royal college of physicians http://bit.ly/vapingresearch2) and it’s relative harm reduction of 95% in comparison to smoking regular cigarettes, he threw his beliefs at me. I know vaping isn’t 100% safe, but I do know that it’s been scientifically proven to be a lot safer than a traditional cigarette. Considering I used to smoke between a pack to two packs a day, I’d say that switching to vaping was the best choice for me and my own situation. I wouldn’t recommend it for everyone, but for me, it works. 

Onto the appointment with the neurologist - She was thorough of her explanation of what role neurology teams play here in San Diego. They help with the diagnostic process but then refer patients to cardiologists because the neurology doctors here don’t feel comfortable managing beta blockers and heart pressure medication. Even though, I’m not on either one. The appointment was over within 5 minutes. And left me back at square one, waiting to find a cardiologist that specializes in POTS. 

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After this appointment my PCP looked to see if there were any other cardiologists to help. We found one and I was put on her waitlist.

*Fast forward another 4 months* They called and my appointment is set for the end of October. Hoping that she might have some answers for me. 

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Give me a break. A Potty break.

Give me a break. A Potty break.

Breast Augmentation: Part 1 - Consults

Breast Augmentation: Part 1 - Consults