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JimL

Found Someone that Knows POTS

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I found Someone that Knows POTS through this website. Dr Todd Levine in Phoenix. I called to setup an appointment and left a VM and they called me back. The person setting the appointment seemed to understand what I am going though and almost instinctively knew the runaround that I have gotten. She said I should have been referred to Dr Levine or a neurologist a while ago. Unfortunately, the closest appointment is May 21st. They put me on a list for cancellations, so we'll see. I am hopeful, for now. 

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2 hours ago, KiminOrlando said:

May 21st? Honestly, that is pretty quick. 

My appointments took 6 months.

Glad you found someone. 

I am old school. Before moving to AZ, I never had to wait that long for appointments. In the last 7 years things have changed. Practices are more corporate and they patient to doctor ratios are very high now. In spite of eschewing single payer, americans are drifting towards that kind of wait times and whatnot. 6 months is nuts, but what can you do? After doing the specialist shuffle for the past 7-8 months, I've had enough. 

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I had to wait one year for my specialist appointment - and he was worth every waiting second!!! Once you finally talk to someone who understands POTS it is such a relief! After 3 years of wasting my time and energy on uninformed and ignorant cardiologists it was a cure in itself to be heard - and understood - by someone who sees people like us every day. Honestly - who in their right mind would CHOOSE to see dysautonomia patients? --- When my sister - who also has POTS - finally ( and by accident ) found a doctor who knew about POTS ( PCP ) she cried all the way home because it was such a validation. And he has made a huge difference in her treatment. I wish you well and hope you will find some answers!! 

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2 months for a new patient appointment isn't too bad. Due to cancelations it took almost 4 months for my son to get a new patient appointment. Even when I scheduled it, it was 2 months out. My specialist is alway super busy and behind. He has a nurse practitioner now, so that has been helping out a lot.

It is definitely worth the wait. When you have a doctor that doesn't look at you like you are crazy, it is the most wonderful feeling in the world. 

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5 hours ago, Pistol said:

I had to wait one year for my specialist appointment - and he was worth every waiting second!!! Once you finally talk to someone who understands POTS it is such a relief! After 3 years of wasting my time and energy on uninformed and ignorant cardiologists it was a cure in itself to be heard - and understood - by someone who sees people like us every day. Honestly - who in their right mind would CHOOSE to see dysautonomia patients? --- When my sister - who also has POTS - finally ( and by accident ) found a doctor who knew about POTS ( PCP ) she cried all the way home because it was such a validation. And he has made a huge difference in her treatment. I wish you well and hope you will find some answers!! 

I felt like that just talking to his scheduler/assistant. She seemed to know what I was talking about and understood that we/I get the crazy looks. I was apologizing for rambling, but she said that's fine, she understood why. 

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2 hours ago, StayAtHomeMom said:

2 months for a new patient appointment isn't too bad. Due to cancelations it took almost 4 months for my son to get a new patient appointment. Even when I scheduled it, it was 2 months out. My specialist is alway super busy and behind. He has a nurse practitioner now, so that has been helping out a lot.

It is definitely worth the wait. When you have a doctor that doesn't look at you like you are crazy, it is the most wonderful feeling in the world. 

So far, I've gotten the crazy looks or at best, go through the motions of whatever tests they happen to do. One problem I see with specialists is that they don't take the whole body into consideration. If you go to a GI guy, you have a GI problem causing it, Cardiologist, a heart problems, etc. A good internist should be able to put the pieces together, but with 10-15 minutes per patient, it doesn't lend itself to deep discovery. 

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23 hours ago, JimL said:

So far, I've gotten the crazy looks or at best, go through the motions of whatever tests they happen to do. One problem I see with specialists is that they don't take the whole body into consideration. If you go to a GI guy, you have a GI problem causing it, Cardiologist, a heart problems, etc. A good internist should be able to put the pieces together, but with 10-15 minutes per patient, it doesn't lend itself to deep discovery. 

There are some naturalist doctors that do take the whole body into consideration, but insurance doesn't cover them. I agree with your statement though. I think that is the hardest thing to deal with. 

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