undiagnosed (continued)

[TeeDee63]

Hello all,

Thanks to all those who responded to my post below. Following on from what I read I did contact Dr Elizabeth Price who is based in Swindon. I have been given a telephone consultation for next week, at a cost of £200. What are peoples thoughts on this? I do not want to be paying out and getting nowhere, but I also feel in limbo as I have all these symptoms but my doctor ruled out sjogrens on one blood test. Will I need to have further blood tests for Doctor Price I wonder, and if so I’ll probably end up going down a route I cannot afford so the initial £200 will have been wasted. Has anybody had an initial telephone consultation with Dr Price, and if so, would you mind stating your experience please.

Many thanks

T x

[weathervane]

i had 2 private appointments with my rheumy and was diagnosed with Sjögren’s, i was then taken on to her NHS list . The treatment im on (rituximab) is not available privately. You will probably need other tests which you might have to pay for on top of the consultation so costs can add up . Try to get some idea of this when you speak to the rheumatologist.

Good luck, I hope you have success with a diagnosis x

[dg70]

Do you live far away and is that why you have a telephone consult? She usually gives me an envelope to take back to my GP for blood tests but I guess she might write that in a letter to your GP, she's good but I had a face to face appointment with her when I was diagnosed but at least she does not diagnose purely from blood results. The London Lupus Centre has some very good reviews as well. Most of the consultants there cover most other immune system disorders like Sjogrens as well as SLE. Several in My Lupus group recommended Dr. Arvind Kaul. An hour is roughly £240.00 but it's very thorough by all accounts. One lady travelled from Wales to London and said it was the best £240.00 she'd spent and goes there once a year now. You can look up their website. They are situated opposite HMS Belfast along the Thames nearest to London Bridge Station or Blackfriars Station. If you can see someone face to face I would think it preferable.

[TeeDee63 in reply to dg70]

Thank you for your reply dg70, yes, I live in wales too so therefore they gave me a telephone consultation. I’m just not sure I’ve done the right thing and don’t want ( or can’t afford to) waste money. If she writes to my GP to conduct tests that should be ok, but my surgery are hopeless hence trying to get a private rheumatologist who specialises in sjogrens. I’ll look up the other rheumatologist you said about also.

Many thanks

T x

[Cas70]

I can only say that my friend had a very thorough discussion with her for nearly an hour. She had emailed her records over to Dr Price who gave her a lot of advice on how to move forward through the NHS - also on over the counter remedies and my friend took it from there, she was pleased. They even discussed her having HRT so it was in depth. My private Rheumatologist sends emails and letters to my GP so that I don’t incur further costs. At least you are talking to a rheumatologist who knows the illness and is a woman. Good luck whichever way you go.

[dg70]

If it's Sjogrens and travel is difficult she is the expert. Looks like Cas70 can recommend her telephone wise. She's always been good face to face with me, giving me time and aware of the costs of private tests etc. Make sure you have all your questions written down and ask about all the blood tests and how they can be carried out. Have photos as well that you can email if you have any.

[SusieW2]

I am in US and have insurance that has paid most of my doctor costs though I pay a monthly fee. But ask yourself, what am I hoping to come out of a diagnosis? Is there treatment or medications that will become available to you if you have a diagnosis?

[NorthAtlantic]

Hello,

I am based both in France and the UK. I wasn't really given a choice over the biopsy in France, they just sent me for it. Yes, it was painful but I had no subsequent side affects and, all in all, I'm glad I had it otherwise I would still be waiting for a diagnosis today. It was the one thing that clinched it in my case as the blood tests were inconclusive.

Re Elizabeth Price, I haven't been to see her as I balk at the thought of paying out £200 for something that should be free, expeicllay if it's just a chat over the phone. However, I know several people who have been to see her, some were referred about 10 years ago by their NHS rhemuatologist, others have gone private. From what I gather, she and a man in Birmingham are THE specliaists and really know their stuff. However, there is a limit to just how much they can do in the case of this under-researched condition. I tend to agree with Weathervane, that it might be best to go back to the rheumatologist and try and get some treatment on the NHS.

I see that other posts below are recommending the London Lupus Clinic which may be better value for money and face to face. After all, you do need a physical examination.

The other concern, as has been pointed out, is all the follow-up, if you have to pay for that as well.

[Nonapplicable in reply to NorthAtlantic]

I know it's been a while since you responded to this, but any clue what the name of the gent you mentioned in Birmingham was? Thank you