Recommend me a specialist in NW UK pl... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Recommend me a specialist in NW UK please

Tomcat profile image
5 Replies

After self medicating for the past 5 years or so my health is starting to decline, latley my memory has gotten really bad (along with my concentration) and I'm not also getting very painfull ankles and feet if I'm sat or lay down for a long period. As my previous specialist at my local hospital in Wigan moved fields and her replacement was useless I'm now looking for another specialist in the Northwest Uk. I've seen the list of recommended specialists but as quite a few are actually rhumatologists rather than hemotologists then I'm not sure which I'd be better off seeing, either way it's going to mean traveling about 40 mins to see one. Any help appreciated please.

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Tomcat profile image
Tomcat
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5 Replies
MaryF profile image
MaryFAdministrator

I would have thought that a Rheumatologist would tie you in with a Haematologist, please get referred to somebody off the list, that is a good starting point. MaryF

Tomcat profile image
Tomcat in reply to MaryF

Thanks Mary, I'm going to try ringing one of them later on, see if I can self refer myself as my doctors useless.

MaryF profile image
MaryFAdministrator in reply to Tomcat

I know I go on about this, and if necessary take you firmest friend or most articulate relative with you as patient advocate to GP, it is the tests that cost so much. Make sure you do your bloods for Hughes Syndrome/APS plus gather up old paperwork anything you can. Also get them to run a Thyroid panel and also for D, B and iron, do them in the morning and insist your GP gives you the forms for these, it is the least they can do, then take that with you to the private appointment. MaryF

Lure2 profile image
Lure2

I agree with Mary! She knows what to do in a case like yours.

If you get the drugs you need from an APS-specialist I am sure that your memory and other symptoms of our illness will improve a lot.

The main thing is to be well anticoagulated as we have too thick blood.

Best wishes and good luck from Kerstin in Stockholm

lynzy profile image
lynzy

Hi I was diagnosed by A haematologist at Liverpool Royal 4 years ago. She was brilliant, and suggested it was APS after me explaining all the symptoms I was having. I'd never heard of this condition before I went to see her, and she really knows her stuff and what ranges your INR should be in. I'm sure I submitted her details so they could be put on the forum list May was telling you about in an earlier post. Good luck and hope you get some help in the near future.

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