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In Need Of Guidance Or Suggestions Please...


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Hi All,

I'm hoping someone can offer a suggestion of what to do next.

I have been unwell for about 5 years and have seen several gps and specialists. I got my diagnosis on 12/24/15 by a cardiologist after a follow up from the Er where I was diagnosed with OH. The cardiologist confirmed OH and POTS by a poor mans test.

I have not seen my gp since October. I had seen him every 3/4 months with vague symptoms which he would run basic blood work (normal) and tell me I should really get my anxiety under control!

Thanks to the suggestion of another member here I am scheduled to see a good dr in Chicago on 2/16. What I'm wondering is if it would be worth letting my gp know about this diagnosis and seeing if he wants to/can run tests for underlying causes in the meantime. I feel that he needs to be made aware of it regardless as he probably still thinks I'm a nutcase. Also it would be beneficial if he has other patients presenting as I have and maybe he could recognize it so they get better care.

My symptoms have been especially awful these last few months and I know deep down that there is something causing all this.

What would you do if you were me? I appreciate any and all suggestions. I hope everyone is having a good day!

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Hi Robin,

In my opinion, you should ask the cardiologist to send the office notes that Co firm this diagnosis to your gp. He should know.

I know some folks here have had success with their GP working on causes with them. My GP is supportive and maintains notes on my case from all my different specialists in case I have an emergency and also for disability insurance purposes. But, he has admitted that my problems are over his head. He is very supportive of me going to specialists though that have specific knowledge in EDS, MCAD, POTS, etc..

My bet is you will have to feel this doctor out and see if he will help or if you will Need to seek a dysautonomia specialist to work with.

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Hi Robin,

Welcome to the forum!

Katie made a really good suggestion about having the cardiologist who diagnosed you send the results to your primary. I think this could be really useful for you, so that he sees a diagnosis on paper. Also, I know you mentioned that you have an upcoming appt with a specialist in February (good luck btw!), in my experience, most GP's will refer out for these specific cases and take the recommendations of the specialists. So, my advice would be to schedule a follow up appointment with your GP after the specialist and make sure all the testing/office notes are forwarded.

Wishing you the best,


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