Still waiting

[balamuti]

Hi all, Just wanting to connect with others and possibly gain some advice here. Brief history 6 years ago I had a retinal vein occlusion (TIA) and a year and a half ago I had another Retinal vein occlusion. I have been on clopidogrel for 6 years. I have seen a rheumatologist late last year, first blood did show positive Lupus Anticoagulant, second test was borderline, what ever that means. I feel that she is not sure what to do with me now and has referred me to a haematologist, 4 months has passed since referral with no future appointment in sight due to a very long waiting list. More recently I am suffering with very painful joints, my body is aching all over everyday and I am very stiff. I am 46 years old and have a very active life, I run , box and cycle. The pain lately is really getting me down and I am not sure where to turn to. Could anyone offer any advice or suggest a specialist perhaps in my area?. (Stockport, North West)

[baba]

"positive Lupus Anticoagulant" and TIA's is indicative of Hughes Syndrome/APS/Antiphospholipid/"Sticky Blood"

More info here:

ghic.world/

healthunlocked.com/hughes-s...

[Bakbre]

Hi Balimuti

You sound as though you are having a bad time of it at the moment. If I were you I would go back to my GP and tell him/her about your Reumatologist appointments, that you feel that you are getting nowhere fast except in more pain, that you are really worried and that you need some help. In my experience I have found that most GP's do try and help.

If that isn't successful I would get onto the PAL Department at the hospital you see your Rheumatologist in, explain the situation and see what they can do to help. Again I find PAL excellent.

I hope you feel better soon, let us know how you get on.

[balamuti in reply to Bakbre]

Hi Bakbre, thank you for your reply. That info is really useful! I have never heard of PAL before but I will call them tomorrow, I'll also go and see my GP.

[creaky]

Good suggestions here already but I would also phone the hospital booking line and ask where you are on the list and if you can be considered for a cancelation, try to be available if they call you at short notice. Generally make a bit of a polite fuss.

I hope that you are feeling better soon.

[balamuti]

Good advice, thank you CREAKY, I did try this last week but may try again this week also x

[Paul_Howard Partner LUPUS UK]

Hi balamuti ,

If you are wanting to ask your GP to refer to you to a different rheumatologist for a second opinion, I'd recommend requesting a referral to the Kellgren Centre for Rheumatology at Manchester Royal Infirmary. It is a LUPUS UK Centre of Excellence. You can read more at lupusuk.org.uk/centres-of-e...

[balamuti in reply to Paul_Howard]

Thank you Paul for that info, I think this will be my next step.

Andrea