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POTS- Finding a CFS/lyme friendly (or any) doctor willing to test for POTS- Toronto, Ontario

Discussion in 'ME/CFS Doctors' started by sarah-jane, Oct 1, 2016.

  1. sarah-jane

    sarah-jane

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    Hey everyone, new to the forum. I've been sick for 7 years now with various things and was tested and treated for lyme disease in the US. I am, however, still ill, unable to work, and there's not much evidence that more antibiotics will help me so I stopped seeing that specialist a few years ago.

    I went to the women's hospital for CFS (my diagnosis in Canada) and they didn't seem to want to follow up with me and my main doctor didn't seem to see anything in my charts about doing the POTS test, which the doctor at the women's hospital said she would check me for. I was sent to a neurologist who told me he was surprised I was so reasonable, since my referral made me sound like a lunatic.

    Maybe they did do the standing test, I don't recall, but she mentioned a table top test which I never was referred to and this was over a year ago.

    My main doctor doesn't seem to really be down with the CFS diagnosis either, she writes in my disability forms I have no significant impairment although I tell her I have difficulty standing and walking.

    I just performed the pots test at home three days in a row and with the exception of one day where my pulse topped at 193 bpm, it goes pretty much like this:

    84 bpm resting on back for 5 minutes
    standing, no movement, 2 minute intervals:
    120
    135
    141
    144
    138

    This according to the internet (I'm sure my doctor would love that) qualifies me for a POTS diagnosis. Now, if I go into her office and say "I want a referral to a cardiologist, and here are some things I measured" it may make my care even harder if she sees this as preoccupation with my health and blow off the cardiologist suggestion. Every doctor she has referred me too has concluded from the one appointment that my problem is psychosomatic.

    However, if I hand her the name and number of a specific person who is known to believe in CFS, and specifically POTS, she may refer me and that doctor may take me seriously.

    tl;dr If you have a POTS doctor in the Toronto or just even within Ontario that you think would be sympathetic please let me know so I can see if I can get a referral. Thank you. Even if the person is for CFS that does not mean they are open to POTS.
     
  2. Valentijn

    Valentijn Senior Member

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    @sarah-jane - Can you get a new GP? Ones who believe in psychosomatic disorders very rarely change their mind.
     
  3. sarah-jane

    sarah-jane

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    As someone who had psychosomatic symptoms for many years unrelated to this I don't discount the existence of them.

    I find that every and all doctors do not believe in the existence of debilitating symptoms of unknown etiology, that only ones with known causes are severe, over emphasize the continuity from my past anxiety disorder, and changing doctors would be of little help in that regard. Even when reports say CFS is as debilitating as congestive heart failure they do not believe *I* experience that level of disability probably because I am young, normal weight and relatively attractive.

    That is why I was hoping this forum would have a database of CFS friendly doctors, even if I change doctors I would likely end up with one who is also not CFS friendly as it's not a problem with her so much as a systemic cultural problem with the types of people who go into medicine.

    The website for lyme disease was able to provide me with a lyme friendly doctor almost immediately in my area. I'll contact the owner of the website directly then.
     
  4. Jill T

    Jill T

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    Toronto, Canada
    @sarah-jane

    I am housebound with ME/CFS and POTS, and live in Toronto.

    In Ontario, the POTS experts are Dr. Juan Guzman and Dr. Carlos Morillo in Hamilton. For me, that's too far to go.

    In Toronto, there is an Arrythmia clinic at St. Michael's hospital with tilt table testing (which can be used to diagnose POTS and other forms of orthostatic intolerance). I have an appointment there next month.

    For my ME/CFS, I am seeing Dr. Sarah Selke at Westside Doctors, 27 Roncesvalles. She is a GP with specialized training in ME/CFS, FM and MCS. You can see her as a specialist with a referral from your GP. However, she is currently on maternity leave until about mid January, 2017.

    Dr. Selke had prescribed meds for my POTS, but I was having side effects and decided to try a cardiologist while waiting for her to return from mat leave.
     
    Rlman likes this.

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