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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.
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.