specialist in scotland

[Totallysick]

Hi, i have read the replies to my last post. i was wondering if anyone could recommend an APS specialist in Scotland. As everyone says i should see someone who understands APS. where i live,they dont seem too. Or if anyone lives in the North of Scotland (Aberdeenshire) with the same problems i would love to hear from them. I have looked at the list the forum displays, but just wondered if anyone knew of any others

[Manofmendip]

Hi

There seem to be several specialists in Scotland on the HSF website: hughes-syndrome.org/self-he...

None in the north of Scotland though.

Dave

[MaryF Administrator]

Hi there, I am pleased you have looked at the list and that is your best bet, I am sure other members will be in contact, from nearer to you. Some in Scotland do use the nearest specialists and others travel down to London. Best of luck. MaryF

[Hidden]

Well, I dearly wish to move to Scotland and simply access what 's on offer there. But I doubt if I'd move even further away from where I am. Going to London from North Scotland areas must require arriving in London a day before the appointment and stay overnight and then come home after the appointment. From where I am, London is a day trip, just about I manage.

NHS in Scotland is sort of tricky for those (or someone like myself) who have/has consultants here in England. Travel would be probably, very die hard if you are not well in particular. I don't know enough about the cross-border referral situation in Scottish healthcare service but I take it it's hard to get referred to an English hospital as far as I get to hear? Hope you'll find someone suitable in Edinburgh or Glasgow.

[MrsMouseSJ]

Hi. I'm in Scotland, in the west and my APS is handled by a rheumatologist not on the HSF list. However I am happy with the level of care I receive (although, of course, I can't say whether it would be any different if I were to see one of the specialists listed on the HSF site) - I am listened to by a kind, thoughtful and seemingly knowledgable and thorough person and things are properly explained to me.

From your post I get the impression you are already under the care of a specialist but are not particularly satisfied. Hopefully you will get some specific names from others. But perhaps simply changing on the NHS might improve matters? Pot-luck has delivered for me; it's always worth a go before potentially forking out to see someone. Best wishes.

[Totallysick in reply to MrsMouseSJ]

Hi, thanks for the reply. I would be happy just to get someone who understands APS. I would happily stay with the NHS if i could just get some help and advice. But i just dont seem to get any. Apparently im at the Drs tomorrow for an Alzeimers test. Because i mentioned to my neurologist that i had memory problems.

[Lure2 in reply to Totallysick]

Now you must be careful. We have found that the neurologists are not good on APS-symptoms. I was tested for bad memory but then the doctors KNEW I had APS.

Be sure to get a very wellinformed doctor who knews APS.

Best wishes again from Stockholm and Kerstin

[Hidden in reply to MrsMouseSJ]

Hi there - please could you let me have the name of your APS specialist so the charity can write to them to see if they would be happy to be included in our list? Thank you

[MrsMouseSJ]

Assuming that the neurologist is barking up the wrong tree - or even ferreting about in the wrong wood! - then, oh boy! Hmm, perhaps paying - at least for an initial appointment - with one of the Scotland-based drs on the HSF list would be worth it. At least they would then hopefully look to ensure a better quality of future treatment on the NHS. I can't suggest the person I see as they don't offer private consultations but there are other good people on the list.

[Hidden in reply to MrsMouseSJ]

Thanks for emailing me and passing on your doctor's details

[AvsG]

Hi, I live in Perthshire. I was wrongly diagnosed for 22 years ( mostly by Neurologists ). I finally got my diagnosis last year from Prof Hughes at London Bridge. He recommended Prof Belch at Ninewells Hospital in Dundee. My first appointment was with her colleague Dr Bains as she does only a few clinics. Dr Bains knew all about Hughes Syndrome and Sjogren's Syndrome and immediately arranged a series of tests/checks. I got a full MOT! I attend the clinic at Ninewells every 3 months and will still see Prof Hughes once a year. I would recommend these 2 Doctors as they have really helped me but most importantly they know all about Hughes Syndrome. Good luck!

Avril

[Lure2 in reply to AvsG]

I am happy for you that you at last have found your Hughes Syndrome doctors!

I wish you a good Health!

Kerstin in Stockholm

[Totallysick in reply to AvsG]

Thankyou so much. Im at the Gps shortly, so i will give them the names you said. I will happily travel down to see them. I am prepared to do anything, to confirm im not imagining everything. Which the Neurologist implied 2 weeks ago. It cant be in my head,cos it was him that told me i had a stroke and several Tia,s. Then told me i had APS. But since he told me that everytime i see him, i feel paranoid and frustrated that im wasting his time.

[Lure2 in reply to Totallysick]

I understand and so do many on this site. It is not in your head. You are not alone.

I guess you got some good names. Good Luck!!

Kerstin in Stockholm

[AvsG in reply to Totallysick]

I felt the same and dreaded each visit to the Doctor. Have you got a family member or friend that could go with you and speak up for you? They tend to listen a bit more. Good luck with referral,

Avril

[Totallysick in reply to AvsG]

Hi, I have just been to my Gps. Apparently she needs to write to Grampian Medical Board,to ask permission and give reasons,why i want to see a Secialist. Because i told her of the 2 names you gave me in Ninewells,Fife. She asked me to find out what Department Prof Belch and Dr Bains work in,so she knows who to write too. Any help would be much appreciated

Thanks Christine x

[AvsG]

Hi Christine, Dr Bains and Professor Belch are in Tayside not Fife (closer to Aberdeen!) The address on my letters is: Medicine and Cardiovascular Group, Medicine Directorate, Acute Services Division, NHS Tayside, Ninewells Hospital, Dundee DD1 9SY. I am in Tayside area so it was not a problem for me. I did however get a referral to Edinburgh Royal Infirmary to see a specialist. This was not my NHS area but had no problem getting referred. Good luck!

Avril

[Totallysick in reply to AvsG]

Thankyou, I will gve the Gp the address on Monday. Dont really know why have to find the nformation for them. But it saves time i suppose . I had to expain the other names for Aps to her. Because i mentioned Hughes Syndrome,she had to ask me what i was on about. Aaaaaargh !!!!

Christine xx.

[AvsG in reply to Totallysick]

Good luck on Monday, hope it goes well with your GP,

Avril x

[AvsG]

I meant to say the specialist in Edinburgh was not for APS but another matter

[molly1969]

I too live near dundee. Had 2 strokes the specailists i see are dr doney ninewells. Dr gentleman victoria hospital dundee. Both are very clued up on aps. Ninewells nhs are a teaching hospital and all the doctors and nurses on the stroke unit seem to know all about aps. Hope this helps