1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

frustrated with doctors.. feel welcome to add your own doctor gripes

Discussion in 'ME/CFS Doctors' started by taniaaust1, Jul 26, 2010.

  1. taniaaust1

    taniaaust1

    Messages:
    8,248
    Likes:
    5,216
    Sth Australia
    My current GP is frustrating me as he refuses to research anything.. and wont accept my other diagnoses just cause they were given by doctors other than himself.

    I have POTS (another doctor did diagnose me with it..**sighs** it took a couple of years of me knowing I had it before a Doctor came up with it). I've told my current doctor MANY times i have POTS, he's ignored what I said. Thou recently I basically forced him to put it into my medical records at his surgery. ***another sigh*** I think he did it to humour me.

    Then today, Im there for what was supposed to be a very quick appointment to get another script for anti-inflammatories for my shoulder. He suddenly decides to take my BP only to find out Im in tachycardia :rolleyes: (ggrrr yeah POTS, I've told him I have POTS so many times).

    So once again I tell him I have postural orthostatic tachycardia syndrome and my heart is just doing what it so often does. And he goes "what is POTS?", so i tell him all once again. Once again thou it goes over his head and he's worried I have something wrong with my heart, so tells me he wants me to walk immediately to hospital down the road for heart test.

    (At that point I was not happy as I'd already walked to the surgery and that was what set off the POTS tachycardia.. and the fact he got me on and off my chair about 5 times to look at my arm.. each time I got up was a postural shift. For me these really affect my body).

    So after he ignores what I tell him is going on with my body, I end up at the hospital having EEG.. then walk back to surgery with it. (tachycardia stopped while I was laying there in hospital waiting for them to put on the leads). Of cause the EEG came out fine. (i previously went throu the heart clinic in past with another doctor and had heaps of heart tests).

    Doctor back at surgery took my BP again.. this time my BP has suddenly dropped and is now only 60 (it was 95 when he took it just earlier) which he comments on "I dont know what is going on here". ***meanwhile I feel like winging his neck**** Ive told him in the past that a specialist diagnosed me with autonomic nervous system dysfunction.. yet this doctor will not listen to me.

    Now he's finally also decided I need to see a specialist for my shoulder (i was trying to get him to realise that 2 mths ago).

    Anyway.. im frustrated with my GP but he's the best one in this whole little country town and hence Im stuck with him.

    What's he going to do when the time comes when he takes my BP and it's as high as it gets about twice a day.. my BP often goes up as high as 167/138 (if im standing, cause he doesnt often take my BP he's yet to see that).. I believe he'll go and suddenly ring an ambulance and make me go to hospital (cause he has never believed me when I've told him what it does). When that happens and he suddenly takes my issues seriously... im going to be even more annoyed.

    I bet im not the only person here who's doctor ignores whatever one says.
     
  2. IntuneJune

    IntuneJune Senior Member

    Messages:
    554
    Likes:
    5
    NorthEastern USA
    Taniaaust1

    You are in a tough spot.
    Your doctor is not listening.
    You had diagnoses confirmed by other physicians he is not honoring..
    From the manner in which your post was written, he seems confused regarding the diagnoses.
    Humph...
    I thought your post was going to lead to your finding a new physician.
    But, you are stuck.....he's the "best" in your small town.

    I have included a link below to another post regarding an article written by a physician we wish we all had in our aresenal. This article has the potential of giving you another perspective of the situations we all find ourselves in sitting on the examination table in our doctors' offices.

    Good luck to you, hope those frustration levels can drop a bit. It is never easy.

    June


    http://www.forums.aboutmecfs.org/sh...-chronically-ill-patients&p=104210#post104210
     
  3. moblet

    moblet Unknown Quantity

    Messages:
    234
    Likes:
    129
    Somewhere in Australia
    I won't list my experiences right now as I have a few other things to do with the rest of my life, but wanted to ask what actual tests were done to reach a diagnosis of ANS dysfunction. I realise that in practice doctors may not recognise them as meaning anything, but am curious to know how this was assessed.
     
  4. Esther12

    Esther12 Senior Member

    Messages:
    5,384
    Likes:
    5,888
    I feel like we should have a 'name and shame' section for Bad Doctors. With their full name, address, and details of their problems.

    Maybe it would be legally dubious here, but surely there are ways arround that (wikileaks manages it!)
     
  5. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
    Hi Esther12, I have at least 25 names for that list, I think it would very rapidly become the biggest section on the forum LOL
     
  6. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
    Hi Taniaaust1, seeing as your thick doctor has finally worked out you have heart problems, see if you can get him to send you for a full cardio work up including tilt table tests, then when you fail that maybe the cardiologist will explain to them what it means. You could also print this article out and take it to them to read http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

    All the best, don't let it get you down!!!
     
  7. Marg

    Marg Senior Member

    Messages:
    343
    Likes:
    53
    Wetumpka Alabama
    When I was sick in the 90s no one got it that I had any kind of OI. I was put on a beta blocker with a diuretic, that was the worst thing that could be done with my low blood volume, they did not get any of it and three of the doctors I saw were CFS specialists. I did find out later that POTS has only been known about for about 10 years, wonder if they know now.

    I don't know why the POTS went away during the 8 year remission but it is back and now I know what it is thanks to Dr. Klimas. She could tell by looking at my bp loag and before I had the tilt table test.

    There is a way to do the test yourself at WWW.OIRESCORSE.COM A lot of god information there.
     
  8. Marg

    Marg Senior Member

    Messages:
    343
    Likes:
    53
    Wetumpka Alabama
    Frustratd with doctors

    The link for OI is www.oiresource.com spelled it wrong... sorry There is some very good information there.
     
  9. taniaaust1

    taniaaust1

    Messages:
    8,248
    Likes:
    5,216
    Sth Australia
    Ive had a ton of heart tests in the past from exercise stress test to many other ones. The cardiologist thou had never heard of POTS thou and I dont even think there is anywhere to do tilt table testing in my state to prove it to them.
     
  10. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
    Hi taniaaust1, had a quick look on the net, not sure if this is anywhere close to you but the Adelaide Cardiovascular centre does tilt tests link here http://www.cardiovascularcentre.com.au/2services-1tilttesting.htm and contact details here http://www.cardiovascularcentre.com.au/2contactus.htm I would imagine there are other place in your area that do them as well, there a pretty standard test, we even have them where i live in wellington NZ and are health system is apppalling, mind you a cardiologist who has never heard of POTS is a bit of a worry!!!!!!!!

    All the best
     
  11. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    16
    Vancouver Canada suburbs
    bp monitor

    It's a good idea to get a monitor and keep track of your own bp and hr. Not only will it show your physician it could prevent him from prescribing something based on his testing in the office. I've never had the tilt table testing, the "poor man's test" shows mine, most doctors do not take the time to do that. If you do decide to monitor your own - write down the situations - not yet out of bed, upright for 10 minutes etc. so that the variances can be seen.

    glen
     

See more popular forum discussions.

Share This Page