New here - looking for a specialist

[Curious7Curiouser]

Hello all, thank you for letting me join your little community

I've experienced an ever-increasing number of symptoms for more than ten years, and have seen several doctors from rheumatologists to anesthetists who haven't been able to come up with anything or help me.

Now my GP thinks (and I agree) that all my problems are down to an autoimmune problem, but because I am complex, local rheumatologists won't touch me. He has said that he will refer me to any clinic or consultant I want him to, but he doesn't have the time to research it for me.

So, my question is, can anyone recommend a clinic or doctor who is good with borderline/non-typical cases?

Many thanks in advance. I hope you are all having a good day.

[notoverthehill]

Hi Curious I hope this can help I travel to Manchester Royal infirmary (a bit of travel but worth it )to see Professor Bruce who is a rheumatologist but who over a long period of time has diagnosed me with LupusSLE and has helped with problems associated with this disease and he also specialises In rheumatoid and osteoarthritis and has helped when I needed to see other consultant ie gyno, vascular and Osteoperosis at the moment . I don't know where you stay there is another specialist in Rochdale as far as I am aware and a very good arthritis consultant at Newcastle. Going to the other end of the country GuysHospital in London has a great reputation and as you have already got authorisation there will be no problem with getting a referral from your own doctor as these specialists need referral from your own doctor.

hope this helps

jean

[Paul_Howard Partner LUPUS UK]

Hi Curious7Curiouser,

Whereabouts in the country are you? I can let you know where your nearest lupus specialist is so that you can see somebody with plenty of experience.

If you need any more information about lupus/connective tissue disease, we have a free info pack that I would be happy to send you? Just send me a private message or email [e-mail] with your name and address.

[Kittyjack in reply to Paul_Howard]

Hi Paul could you tell me the best specialists to see. I live in Blyth Northumberland and I am now at my witts end Dr from Wansbeck has suggested I have Bechers and I honestly don't no where to go from here have all symptoms for lupus but not shown in my bloods. I would appreciate any help at all. Kind regards Kitty x

[Paul_Howard Partner LUPUS UK in reply to Kittyjack]

Hi Kittyjack ,

Your doctor thinks you may have Behcet's? This condition shares many of the symptoms of lupus and is also autoimmune. Have they recommended a course of treatment?

I'm afraid I don't know of any lupus specialists in Northumberland. You could try contacting our North East Lupus Group though to see if they are able to personally recommend anyone - northeastlupus.org.uk/

[Kittyjack in reply to Paul_Howard]

Thank you Paul for your reply it was a copy of the letter she sent to my gp so I honestly don't no what action if any will be taken. I am seeing her again in September so I am at a loss what to do.

Kind regards

Kitty x

[Paul_Howard Partner LUPUS UK in reply to Kittyjack]

Hi Kittyjack ,

Have you spoken with your GP following the letter to see what they say?

[Kittyjack in reply to Paul_Howard]

Not yet Paul I have to have a heart monitor on for 24 hours and that is on the 24th next Tuesday then make appointment to see Dr for those results so I thought I would do them both at the same time. I am totally lost in my mind here as so much bad health and it's truly wearing me out x

[Curious7Curiouser]

Thank you for your replies

I'm in Leicestershire. I was anticipating traveling to London to see a specialist. I'll research the things you have said.

Paul, thank you for the offer. I'll bear it in mind.

Thanks again

[Paul_Howard Partner LUPUS UK in reply to Curious7Curiouser]

Dr Hassan at the Leicester General Hospital is a specilist in lupus and so may be easier for you?

[Curious7Curiouser in reply to Paul_Howard]

Thanks Paul. I have seen Dr Hassan in the past but haven't got on with him. I'll say no more... I'm sure he's been an excellent doctor for many people.

[Melba1 in reply to Curious7Curiouser]

Hi Royal Free in London have been amazing for me and I’m atypical (sometimes doesn’t show up in my bloods at all even when I’m severely flaring) and complicated (they have clarified they mean the disease rather than me when they keep writing that!!). I’d definitely recommend them. I’ve also seen the Addenbrooke lupus specialist in Cambridge and they are also excellent and have a great reputation for not relying on blood work/ typical lupus presentation.

Good luck x

[yakamalayo]

Hi. We are in Leicestershire too and my daughter was originally under Dr. ******* at LRI. Suffice to say we asked to be referred elsewhere! She is now under Prof Caroline Gordon and her team in Birmingham, which is one of Lupus UK's Centre of Excellence. A MUCH better experience. A bit further but well worth it (and easier parking to boot).