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Hypermobile Hypermobility Syndrome and POTS

Posted , 2 users are following.

pam_87693
pam_87693

To all those affected by not being diagnosed with Hypermobility. 

please do not do litigation, you cannot blame your consultant, GP or dentist for not diagnosing a condition that they haven't been talked about. litigation costs the NHS millions. The result of this is we the patients suffer. This is one of the reasons why some who need costly drugs can't obtain them. Only the ambulance chasing lawyers gain. The NHS and we the Patients are the losers. You cannot blame a medical professional for misdiagnosis. The only way the profession learns is by mistakes. There are obviously some terrible errors of judgement but not realising that EDSIII/HT is not one of them. The best way to let the medical profession know is to download all the information on both Hypermobility Syndrome and POTS from the websites available. HypermobilityUK and POTS UK This is by far the best way of dealing with this situation now we patients have the opportunity to inform. Any good NHS professional with be thankful for the latest information you can give them. I have given this information to 2 consultants and my GP who was going to pass it on to his colleagues, also to my dentist. I have only been refused by one doctor and I will inform the hospital in which he works. If a doctor refuses to see your new information passing the information to his Consultant is the best way to approach this.

4 likes, 3 replies

3 Replies

  • Hannxm
    Hannxm pam_87693

    Posted

    Sometimes the best thing is to be persistent. 
  • pam_87693
    pam_87693

    Posted

    I couldn't agree more, I see the frustration of youn Hypermobile people who are fine UNTIL their condition becomes JHS, then they in the UK need to be under a rheumatologist. I am very lucky as my Rheumy is a Sjogren's expert, but is interested in Seronegative Sjogren's. I had the sicca symptoms much earlier then most, I now have Seronegative Sjogren's, plus Fibromyalgia and POTS, I am going for autonomic testing next week so it will be most interesting. There is I am certain a degree of overlap in many with SLE and Sjogren's with other specialities such as gastroenterology, gynaecology, ophthalmology, dermatology and neurology. As EDSHT is a connective tissue imperfection whereas Sjogren's and SLE are connective tissue diseases  
  • natasha02658
    natasha02658 pam_87693

    Posted

    I totally agree and think it is awful to sue the NHS. Things like this can take years to get diagnosed and many never get a diagnosis. It's not lik eit is a really common thing that all doctors need to know about, Most GPs haven't even heard of POTS and know nothing or next to nothing about either. I think some people expect too much. Like you said, it affects us all and just isn't fair. By all means put in an official complaint but to take money out of an already stretched public service is just selfish.
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