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Saw my PCP Yesterday - He Acknowledged my Persistence in Advocating in my Health Care


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I went in yesterday my 6 month well being clinic visit. So as usual had my blood work done and then walked over to the physicians side of the building checked in and sat down. I really did not have a lot to go over that has not already been discussed (diabetes and my left leg discomfort) was all i had. Well anyways the nurse came out and called me in. Kinda felt odd because it was 20 minutes before my appointment (this never happens). so the nurse went over the normal questions took vitals but she kept saying i had a really hard go over the last year and a half, thought (Hmm) how would she know that unless she was reading over my messages with the faint clinic (almost weekly relentless posts for the last two years).

So she went to go get the Doc who almost immediately came into the room (never happens either). He seemed to be just bubbling over. Before i even a chance to say Hi he blurted out he really needs to write a paper about me and add my name to it. My jaw dropped under my mask. He the went on to add he read over my communications over the last year and was impressed as to how i figured out that food is such a stressor for me and being instrumental in getting a diabetes diagnosis.

We did discuss the process i used to to come up with really caused me issues (postprandial symptoms) and the testing i used to get there. He also was impressed by the dietitian wanting a OGTT test. without it my diabetes he said would have certainly fell thru the cracks. With my seemingly normal A1c and fasting BG it would have never been picked up on. He did also warn me that some Docs will argue that i don't have diabetes but my clinic and BG numbers show otherwise so he will well document it.

We also covered my autonomic dysfunction for now with the help of (folks at Dinet) i have been managing it well (no injuries in a year). I also brought up whooshing (haha got that blank look) but was ok.

He did order my B12 and folic acid levels to be checked (thanks to Mom) B12 id right at the low side and folic on the opposite end. He ordered 500 mcg daily

He did order CBC that i need to schedule. he wants to see what my RBC counts are as this can skew a A1c test.

He also ordered a Renal ultrasound (relief about time)

All i can add is in my journey here i did not take NO or the other generalized responses for a answer from a provider. When i needed i even came up with my own testing to prove a health concern. persistence in advocating care does work. It did so far for me.   

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Mike you definitely have the best approach by trusting your instincts, taking responsibility for learning about your issues, staying on top of your care, and never giving up! I salute you for your persistence. As patients, we just want to feel better and it's up to us to help our doctors help us. 

As a long time cancer survivor, I learned to assure providers that I am not complaining, merely reporting. How else would they know what we 're going through if we didn't?

But sometimes you just have to keep track and make sure they are doing their jobs. 

If the doc is serious about writing up your case, I think you should consider it. 

Doctors learn the most from challenging cases, and you will be helping others. 

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@rondoMy Doc did come right out and say it would be very difficult to put himself in my shoes and really appreciated taking the extra effort helping him do his job. He also has said over and over again i am his most challenging patient and like you mentioned is learning from treating me. I just wish some of my other providers would have been so inclined.   

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I also have a wonderful cardiologist whom I started seeing when my autonomic specialist was no longer needed. He admitted that he did not know much about dysautonomia but was willing to educate himself and worked with my specialist. He practices at an university hospital and was instrumental in spreading education about dysautonomia there. Today he sees many POTS patients and has said that I was his first diagnosed POTS patient but learning how difficult my journey was he was determined to help others. This kind of physician SHOULD be the norm! 

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@Pistolafter reading some of the stuff you have gone thru you deserve to have a attentive Doc in your corner and others. I know when i first started my journey my PCP was not Dysautonomia aware but after these last couple of years he is up to speed and like your cardiologist i am sure he is spreading the word among his colleagues. My heart doc to some extent even gets it and has made wonderful med changes for me.  

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