Advice please

[puffyface]

I don't think we are allowed to comment on particular doctors on here, but I think we can send a private message?

I am struggling a bit at the moment. My rheumy has been on sick leave for a while and the one I saw when I was desperate was really patronising and made me feel like a hypochondriac. I have a lupus/sjorgrens overlap apparently...but also adrenal issues and am hypothyroid. I am getting awful aches in my legs and sometimes it feels like electricity. My hands and feet burn...and I suspect that this is the sjorgrens and that there is some nerve involvement...but am only guessing.

I have been doing some research into who would be the best person to see. Does anyone have any experience of Prof Simon Bowman? I would be very grateful for any info by private message.

Thank you in advance.

[PMRpro]

Generally I think positive comments are allowed - but not negative ones.

[sarahsch]

Hi puffy face,

I can give positive feedback regarding Prof Bowman. He is the UK's leading Specialist for sjogrens syndrome, & I saw him in 2014.

I found him to be professional & thorough and would have no problem recommending him.

I understand he now works out of my local hospital in Milton Keynes & we are lucky to have him here.

Sarah x

PS: aches in legs - can be iron deficiency. I get this & it seems to preceded showing in my bloods.

[puffyface in reply to sarahsch]

Thank you Sarah. I am pretty desperate, but going to see my private gp tomorrow and will ask him for a referral. Lorna x

[SjogiBear]

Sorry to hear about your situation. Prof Bowman is very nice and one of the rheumatologists with a special interest in Sjogrens. It depends where you are based and how far you are prepared to travel as to who people could recommend for you? I have been to a talk given by Prof Bowman and thought he seemed very good - I think he is still working out of Birmingham one day a week but is now based at Milton Keynes. There is also Dr Elizabeth Price who is wonderful (bit biased as she's my consultant) - she works out of the Great Western Hospital in Swindon and does see patients privately if that is relevant - I know quite a few people have done this and found it to be very helpful. There are other Sjogrens specialists based in London and Newcastle, namely Dr Nirhan Sutcliffe and Prof Ng who others have spoken well of too. I am sure other people will be able to advise you about specialists with more of a lupus bias if that is what you are looking for but I get the feeling that it's the Sjogrens that is possibly causing your most troubling issues at the moment.

[puffyface]

Thank you so much for your reply sjogiBear. I will travel as far as it takes to find someone to help! I did some research and came up with Prof Bowman...however, I had also heard about a lady in Swindon. My bet is that it's your lady! I live about an hour from Oxford, so London, Milton Keynes, Swindon are all do-able. I am going to see my private GP in London tomorrow...and I know he will help. I will talk to him about both of them. As far as knowing which is causing what...I'm not sure I'm ever going to know. It would be really, really nice if someone could deal with each of SS, SLE and Hashi's and know what bits caused what...and help with it. Thank you. x