Will I seem too pushy: So, after being... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Will I seem too pushy


So, after being unwell for 10 years,diagnosed for 7 and having merry go round of different Drs. disagreeing with diagnosis and getting it re-instated and all the various trials and tribulations that it seems are all too common, I emailed the professors secretary two weeks ago to say that as he had discharged me (again) and that I had forgotten to get my "list" out of my handbag,would he mind addressing a couple of questions for me and I also asked if I might try plaquenil (again)

I have read on here that it is perfectly ok to do this and that we sometimes have to fight for treatments/referrals etc.

Anyway, after being told at the Drs yesterday that yes, the egg on my ankle was inflammation and that my blood had on occasion shown inflammation (when I am always being told that all my bloods are "normal") I came home and high as a kite on codeine ( I am very sensitive to medication) I emailed again.

I am now worried that I may have ruffled feathers, a fear of mine ever since 2007 when I was newly diagnosed and I was in a position where I had to badger the gp as the prof was waiting for copies of my endoscopies before deciding on what thinners to use and the letter got lost and I had had a nasty TIA in the meantime and I was begging the DR to contact the prof but they refused,as they had not received the letter ,and my badgering resulted in my being struck off.

5 Replies

I myself have written at times, coming from the position less is more. 2007 is a long time back and they have a clearer picture of how ill you are now. I suggest that if you are going to the GP again, take the calmest and most articulate relative or friend etc you have as an advocate, explain their presence as being there to help you due to how very unwell you feel. If they have discharged you, and you feel it is wrong you must go to PALS and get some help. It is quite clear that you need to be under consultant care. I should at this point perhaps not write a further letter if you have written, but discuss it with PALs. I presume your GP surgery is now behaving in a more cohesive manner? I hope so. Is your consultant somebody who has a full working knowledge of Hughes Syndrome APS?

The alternative is to take all your recent NHS test results as many as you can get hold of and pay to go to London Bridge, which would help guide your GP practice and maybe bring local consultant care back into line. MaryF

thank you for that

I have a much better GP in terms of they are nicer,but dont have any real understanding of hughes and they themselves are not happy that thet keep having me discharged back to their care, and say they feel I should have at least annual check ups at a specialist clinic and they have just written to say so

I was under the care of someone with excellent knowledge of APS (Prof D,Cruz)but he is of the opinion that as I am stable, I do not need to be seen again

MaryFAdministrator in reply to donnabrain

You have a very good GP there, good that they are doing this! MaryF


My previous GP was "nice" but wasn't interested in anything "too complicated". Initially, I thought it would be fine but she started ignoring what clinicians are saying. At that point, I changed my mind and I now have a new GP. I personally think GPs are too busy to know anything too "rare" or unusual. But I may well be unlucky.

MaryFAdministrator in reply to Hidden

You GP needs to be clearly guided by a specialist with Hughes Syndrome/APS knowledge! MaryF

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