Help please

[puffyface]

About this time last year I was feeling a bit rubbish, had a red, puffy face and my eyebrows were falling out. I didn't want to bother my very busy local GP (Gloucestershire/Oxon borders) with my vanity, and so I went to a private GP that I used to take my children to when we lived in London.

They told me I had hashi's and gave my thyroxine, which immediately made me feel absolutely awful. I was referred to an endo, who took bloods and immediately referred me to a rhemy. A year later, I still have big thyroid probs as I'm not sure the medication is right and current thinking is that I have SLE and Sjorgrens....although I have heard some chat on mixed connective tissue disease. This is still all in the private system.

I really need to get this deal with (and my medication which is ridiculously expensive) at home. I have booked an appointment with my local GP at the beginning of next week to explain what's going on. I have all of the letters and blood tests to help. What I would love to hear about are any good rhemy's working in Oxford or Cheltenham. I am very happy with who I have seen in London, but I can't keep travelling back and forward and I suspect if I am allowed to be seen on the NHS, I will have to see someone more local.

What I don't want to do is to go backwards....and so any advice on someone sympathetic would be really helpful. Perhaps I can even suggest someone to the GP.

I would be incredibly grateful.

x

[amandalilley]

Hi. I wish I could be the bearer of good news for you. But after my experiences, finding a good consultant who specialises in Lupus is very hard, unless you go private or wish to try and join the long waiting list at St Thomas, Louise Coote Unit.

Both of which I have done. I am in Cornwall, travelling to London every six months to a year was beyond my budget, even on the nhs and paying, well, if i won the 32 million from last might, I would, of course look at more options, but again, way out of the normal person budget.

Unfortunately, we are grouped with the Rhumatology units of most hospitals and if like our local hospital, we only have the one major hospital for Cornwall, the specialists do not specialise in lupus but all areas of Rhumatology on a lesser scale, you are stuck with that option.

If you are lucky like me, you have an amazing group of local gps who do everything they can to help, but my personal experience with general rhumatologists is not great.

They have neither the time, experience or knowledge to deal with such a complicated, manipulative, scary and difficult disease such as lupus, let alone the different symptoms experienced by different people.

I spent a long time doing my own research, contating Lupus America and other Lupus organisations across the world, Canada and Australia were good too and presenting the facts to my local gp. Since then (over 15 years now) we get things done together.

I am so sorry that i am unable to offer anything more positive, i am sure there are many many good people you can contact and the amazing lupies on this site will help.

Sending love, hugs and best wishes and may the universe help you find the right person for you. X

.

[puffyface in reply to amandalilley]

Thank you for your reply. Luckily my husbands private medical insurance is paying for the specialists and diagnostics at this stage (although not for much longer)...but I have to do the meds (at about £800 a month). I'm frightened that the Nhs will start the whole process again...I think the sooner I see him, the better.

[LUPUSadmin]

Hi Puffyface,

We aren't aware of any lupus specialists in your area I'm afraid. We've come up with a few ideas though for hospitals that might be easier to access than London.

Firstly, Great Western Hospital in Swindon has a rheumatologist who specialises in sjogrens syndrome but knows about lupus. Her name is Elizabeth Price. You could ask to be referred to her.

Secondly, Bath is home of the Royal National Hospital for Rheumatic Diseases. If Bath is accessible to you then this also might be worth a try.

George

[happysally72]

I live near Brighton on the south coast, so can't help with any consultants near you but if you take your private prescription and a copy of any letters & tests done privately to your local GP, he or she will be able to give you an NHS prescription for the medications, so you don't have to pay the high cost of private ones. I have done this in the past and had no problems getting my gp to do this. Have you asked your local NHS GP to refer you to a local specialist?

I was going private in London when I got diagnosed with SLE, Sjögren's, Hughes syndrome & fibromyalgia. This was after no success getting diagnosed by an NHS rheumatologist and then a local private rheumatologist (both of whom said they thought I might have SLE but neither would commit to a diagnosis or were able to find another explanation for my extensive symptoms, including joint pain, chronic fatigue & pulmonary embolisms), my husband couldn't bear seeing me suffer and searched the Internet to find a top Lupus specialist and after examination, questioning & blood tests I was diagnosed within a week!

It was only when admitted to hospital for a pulmonary embolism, they asked if I was seeing anyone local and I said no and explained why and they said they had a new Proff in rheumatology that specialised in Lupus and they referred me to him, so that I no longer had to make the journey to London.

You can look online at your local hospitals & check out who specialises in what. If you do this then you can ask your GP to refer you to them. I imagine you need to see an endocrinologist in addition to rheumatology because of your thyroid condition but if not sure your GP can advise.

I hope this info can be of some help to you. I wish you luck in getting a full diagnosis and in turn getting the appropriate treatments, because it will make a difference if it's being controlled properly.

Best wishes

Sally xxx

[puffyface in reply to happysally72]

Thank you Sally. I think getting the diagnosis in London was sensible...having people closer to home to help when you need them would be nice too. My main worry just now is getting my local nhs gp to take me on...with my costs. I have no reason to doubt him, but just would like that worry out of the way. xx