Do you haev a specialist APS doctor/if not, how much does your GP know about Hughes?

[Eliza_E]

I neither have nor know how to get an APS doctor and my GP knows nothing, nada, zilzh, zero. I'm teaching them as we go along1

[LesJames]

As above!!!!

[tassie]

I think even a lot of the members here who have a specialist still have to teach them as they go along. Not many are lucky enough to find a dr who knows anything about apls.

If you can find one that will listen and is willing to learn you are very lucky.

[Lesley_D]

Hi Eliza and all, firstly are you in the UK? if you are you could ask your GP to refer you to St Thomas in London, they run an APS clinic. If you can afford it Proff Hughes takes private patients. You could also take some info from this link and ask your doctor to go on the site? - hughes-syndrome.org/

I do hope this is helpful.

Smiles

Lesley

[Eliza_E in reply to Lesley_D]

Hi Lesley,

Yes, I'm up in North Yorkshire. Will seek a referrall. Thanks.

[MaryH]

My GP on reading notes from hospital after my having a stroke were " Hughes, hmm , i must look that up, never heard of it" fair enough. About six months later I went to see him and he said, "Hughes, hmm, I must look that up, never heard of it" so I think that answers all there is to know about my GP. I know they are busy people, but I worked for the NHS for 30 years and if I was reading patients notes and I found a diagnosis I was not familiar with I went and looked it up, pronto. How could I treat someone if I did not know how certain things might affect them, the ramifications just go on and on. As for a specialist, I see a rheumatologist, she now thinks I might not have Hughes Hurray, she asked me in a very accusing way about who had diagnosed me, when I said the neurologist, she audibly sniffed!! I did point out to her that I did not diagnose myself, had never heard of Hughes, and if I did not have it, what did I have. I can see myself in almost all the comments on this site. We shall see . . .

Much love to all, Mary H xxx

[Lesley_D]

Mary, for me I would say seek the advice of another rheumy who would consider your feelings and not sniff at you! - for you GP Print of some of the info and sweetly smile and say here you go Doctor as you seem so busy to read up on my disease that you have not heard of, here is some official information from the website (include the website address with the info) hughes-syndrome.org -

You could also tell your GP the disease has other names as Antiphospholipid Syndrome (APS), Sticky Blood Syndrome, and sludgy blood syndrome.

I have had 2 positive tests, and recently a negative, that doesn't mean I don't have the disease, just that I am not in flare up at the moment, but doesn't take away the symptoms.

Sometimes we have to educate our medical staff, my own GP was a mare with my DVT that he did not diagnose, my PE's he missed, my AF he ignored. Then when diagnosed with APS/Hughes he changed and was fantastic, and apparently I am the patient in his practice with the disease.

Keep well, warm and healing smiles to you

Lesley

[taffydaffy]

Hi

I bought my G.P a book from America It was not expensive he loved it I am the only person in my surgery of 10,000 patients with this Illness and if I remember on the 1st day of every month I try to do research on the Ilness you will be very suprised on how much Info you will find x

[SueLovett]

What can I say? I used to live in East Yorkshire and was told by local Neurologist that I didn't have enough symptoms for Hughes, which I had never heard of!

I looked it up and realised that I had most of the symptoms. I went to my GP who new nothing about it but she was at least willing to learn.

I had to go privately to London Bridge Hospital to be properly diagnosed. It was established that I did indeed have Hughes and that I had, most probably, had it for the best part of 30 years.

My GP was great and I took articles in to show her and she was always greatful.

I am now in Somerset and struggling to educate new GP who at least googled it when I told him what I had.

However I am disappointed that he still has a very poor understanding of the illness despite my Consultant calling and speaking personally with him.

The Fight Goes On Chums!

[Eagle]

Yes, I think it is awful that we have to fight so much ourselves. Hopefully, we will get to a point when we have readily available specialist teams plus support staff like a Hughes/APS nurse and an emergency line or protocol. I'm sure it will happen at some point!