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Jasmine81120

395d

I was supposed to have a neurologist appointment this Wednesday. but got a phone call yesterday saying the doctor doesn't treat pots. I have been going through this for 4 years with no answers. A doctor told me I should go to the Mayo clinic, that scares me but at least I would be getting help.

Top reply
    • Beetlejuul

      141d

      Haven’t gone to Mayo for POTS but I’m being assessed for EDS there. So far they’ve been kinda helpful? Got the referral for the EDS clinic after making an appt with a pain specialist. He set me up with a PT and OT consult as well. They need me to do a bunch of labs but wanted 2500 dollars for them so I looked into getting them done elsewhere and they would not order the referrals for them so I had to ask my pcp for the orders. This is all well before my EDS consult which is still a month away. Mayo can be helpful but they’ll be aggravating in the process

    • Beetlejuul

      141d

      Haven’t gone to Mayo for POTS but I’m being assessed for EDS there. So far they’ve been kinda helpful? Got the referral for the EDS clinic after making an appt with a pain specialist. He set me up with a PT and OT consult as well. They need me to do a bunch of labs but wanted 2500 dollars for them so I looked into getting them done elsewhere and they would not order the referrals for them so I had to ask my pcp for the orders. This is all well before my EDS consult which is still a month away. Mayo can be helpful but they’ll be aggravating in the process

    • chocolatetruffle

      395d

      To be honest, I haven't heard the greatest things about Mayo for pots. I would do some research before you choose to travel to mayo if it's a significant distance away. They can probably diagnose it if that's what you need, and tell you to do the basic things like take a beta blocker, eat salt, etc, and have you get treated locally from then on. I would try to seek out a pots specialist if you need more than that, as close to you as you can of course

      • Jasmine81120

        394d

        @chocolatetruffle I've known someone who's gone there for pots treatment. They helped her. I'm having to worst time finding a specialist near me.

    • StressBear

      395d

      I got diagnosed with POTS from a cardiologist. They did a tilt table test. Depending on the doctor and the facilities they have available you can ask for one(it is expensive though). If you go to the mayo clinic they will most likely do more autonomic testing other than the Tilt Table.

      • Jasmine81120

        395d

        @StressBear I've had two tilt table test both inconclusive 😥

    • Quari

      395d

      Why are you going to a neurologist for pots?

      • Jasmine81120

        395d

        @Quari always have, I've been to cardiologists too they didn't know how to help with pots.

    • rosemxry

      395d

      I've heard that the Mayo clinic has great service most of the time. Good luck!!! Sending lots of love and good vibes to give you confidence with this

      • Jasmine81120

        395d

        @rosemxry thank you so much!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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One option for getting help with POTS is to see a neurologist or cardiologist who is familiar with the condition. You can also try joining local Facebook groups for dysautonomia and ask for recommendations from other members. Some people have found success in getting diagnosed and treated by specialists like Dr. Blair Grubb, a world expert on POTS.

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