Sticky Blood-Hughes Syndrome Support
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Another evening wasted in A&E

Still getting swellings on the inside of my elbows and still getting excrutiating pain at back of head (right side only) so off to A&E again last night

they took bloods which came back normal

they were very interested in my swellings and lots of different people came and sqeesed and poked them but they could not tell me what they were and said I really needed to go back to the lupus unit

I told them about my problems with a new referall having been made but my consultant saying he does not need to see me as my bloods are normal and he has arranged for the nurse to call me and that I have so far not spoken to the nurse although I have left 4 messages on her answerphone over the last 3 months

they said I really must see him

I explained that I have booked myself to be seen privately in just over 2 weeks time now

they said that is good

they did not seem interested at all though in the pain in my head though and it is that which had caused me to go as I am now quite frightened by it (it comes on for no apparent reason now, for those of you that may remember my post the first time I got it and that was brought on by sex)

It feels as though I have a swelling inside my skull

Should they not have given me some sort of a scan

3 Replies

Hi Donna.

Good luck.



Thank you Dave


I'll join you in counting down the days until your apt. There is so much misunderstanding out there! Especially in the ER rooms! ERs are set up to treat acute illness. Not chronic ones. They have gotten much better in the past 20 years in recognizing and treating acute presentations of some chronic conditions--such as high BP and angina. But they still have a long way to go to properly evaluate acute symptoms of chronic autoimmune illnesses. And in their defense, ( a very appropriate word there--"defense") nearly every ER is besieged with patients. Many of whom really have no business calling their symptoms an " emergency." But they show up, and they- we--all must be processed.

I too have had important, life threatening symptoms dismissed by ER docs. But my late Father was an ER doc, so while there is no excuse for the lack of attention paid to us Hughies, there is a reason. And that reason, ( at least here in the States,) seems to be with distinguishing the the real in chronic patients, from the " GOMERS, aka, the " Get Out of My Emergency Roomers" who are squandering valuable time, better used on the truely sick!

Let us know how it goes. And best wishes for that upcoming appointment!


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