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Sticky Blood-Hughes Syndrome Support
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update...as per previous posts/kidneys/complaint

Hi all,hope your all as well as can be...

just an update really to say i had my complaint response from guys hospital,very well managed and my diagnosis is still in place,they have tried to say that it was lupus they were referring to as negative,and that fybromyalgia was responsible for just that episode of kidney problems.but that i do have aps. however it wasnt my words but the nurse that used the phrase 'you dont have an auto immune disorder' so i will write back to them. they have changed prescription procedure to ensure all prescriptions are sent and received through the post. and the official line is that dr k is still on sabbatical and no date for his return is known yet.

thanks for all your replies and posts when i was literally at the point of giving up and on the floor. only us hughies know the fight it takes to get diagnosis and the fear of that diagnosis being taken from us,and the damage not being treated can do to us.

thanks again xx

3 Replies

well done with continuing to stick with it, and remember a regular check of your D, iron and B12 plus the 'Fibro' which often turns out to be a slow Thyroid... hence why it is important to understand the doctors often only do the TSH test which in my opinion is not fit for purpose, I do these regularly, paid for by myself which found just how bad my thyroid was and how it has improved: thyroiduk.org.uk/tuk/testin... I do mine via Blue Horizon!

Best wishes. MaryF

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Hi emmaj,

You have been on this site for several years. Me too.

I have read a little about your bad luck with the Doctors.

It must make you feel terrible and low and perhaps even give up. But do not do that!

I read what APsnotFab wrote 2 months ago. She suggested you should go to London Bridge and try to see Professor Hughes himself. I also think you should do that. Really try. He is a person who understands us and APS.

As i live in Sweden i do not know in detail how you will manage but give it a good try!!!

Best wishes and my sympathy go to you emmaj!

Kerstin in Stockholm


i was going to,however he isnt taking on new patients,and after my complIng letter my diagnosis is npt in question,and my neirologist is great and understands aps so im happy x


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