APS GROUPS IN LONDON?

Hi everyone,

I've been a APS sufferer for many years and I have many other medical health issues that have stopped me living a normal life. I've wanted to start a group or a coffee get together. I did not realise (as far as I know) I'm the only one around my area that's got APS. I was shocked that when I asked my dad's hospital to test to see if my dad as APS,

his Anticoagulant clinic do not have any facilities to deal with APS sufferers, surely knowing that I have it, and yet he has not been tested. The hospital told me that APS it's quite rare, but to me it's not as rare as it seems.

I'm taking a home counselling course so that I can start a website on APS and other related illnesses, plus RSD, (this illness for some reason the medical board has put it under CRPS), but I was diagnosed with RSD by The National, Queens sq, LONDON.

I know there is already a website for APS sufferers, but I'm not sure if it's based in the USA.

I live in Islington, North London, if there is anyone in the area, or feel that there is a need for more groups or is there already more groups, please let me know.

Regards, Tina

**** Edited By HSF Admin****

Please PM Tina for her email address

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5 Replies

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  • Hi there

    I used to run the support group for London before I moved to Cornwall. We met about once a month socially at St Thomas, and once every three months for education, organized by Richard Glaves. I suggest you email Kate at the charity if you want to set up another group, as I always worked under her umbrella so there was some accountability, and no duplication. I hope you can find some support. I found it really helpful

    Blessings Ann

  • Hi Tina

    As Ann says, she ran the London support group for many years so it might be an idea to contact all the members to see if they want to meet up with you?

    Our charity already has quite an extensive website: hughes-syndrome.org/index.php so am not sure you'd want to spend too long duplicating information.

    Please do send me an email if you want to discuss things further: kate.hindle@hughes-syndrome.org

  • I assume you have seen this info?

    ninds.nih.gov/disorders/ref...

  • Hi,

    How can RSD be the same as CRPS? I was diagnosed with RSD many years ago by the very famous hospital, The National Hospital for Neurological diseases, at Queens Square, London.

    I know that RSD is painful, but so is all my other health issues I have are painful, but none of them are called CRPS, but it's not just pain you get with RSD you also get the burning inside the leg from the knee down, no warm water because it feels like it's boiling water, plus numbness, small electric shocks etc. The hospital did a placebo test on my leg, I did not know about this at the time, and it proved to be RSD, and I they decided to treat me with Guanethidine blocks every 3weeks, it was great, it's calm down most of the symptoms and was bearable, until I got APS, so they had to stop the blocks. Now I suffer 24/7 badly. CRPS is people that have chronic pain, yes I do, but having CRPS, don't include RSD. There is a lot of controversy over this, especially GP's & hospital doctors. but as I stated, I was diagnosed by a top hospital, and still attend, and they still call it RSD.

    So please tell me how you think that both are the same, I'm intriged.

    Regards

    Tina

  • Hi,

    So why is that when I've just had a full report of my illnesses, they have still got it as RSD?, and that's from the hospital it's self.

    Also why is it that all other pain illnesses are not called CRPS?

    Plus It's very confusing when I get all different hospitals that I attend call different names to different illnesses. This has caused me a lot of problems with my GP. Although she has not much knowledge of my illnesses, I've tried to changed my GP, but the other surgeries will not add me to there list as my GP is known very well throughout my area, and they all say that she is the best. So you can see where and why I'm confused about all these different terms.

    Regards

    Tina

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