A little help...

[jk101]

Hi guys,

So, just wanted to run a couple of questions by everyone...

I was diagnosed with localised scleroderma about 5 years ago after one patch of plaque and linear morphea appeared on my trunk.

My doctor told me that it was just the skin form of the condition, but after more recent research (due to some other symptoms), I'm wondering how people are diagnosed with various forms of the illness?

I haven't really had a lot of the tests that I've been reading about (apart from a punch biopsy and general blood test).

Because my GP doesn't seem that knowledgable on the topic, I'm considering paying for a private consultation (possibly at the Royal Free in London with Doctor Orteu).

Does anyone have any recommendations on specialists, and whether it's better to see a consultant dermatologist or rheumatologist?

Thanks,

Joel

[Monika]

Hi Joel sorry to hear you are not getting the help you need. When I first had lots of symptoms and my local medical consultants didn't know how to treat me I paid to go privately to see Professor Black at the Royal Free. She diagnosed me with Raynauds and Scleroderma and then she arranged for me to be seen regularly on the NHS at the Royal Free at the Scleroderma clinic. I have been going there now for over twenty years and they have been brilliant. Good luck with whatever decision you decide to make x

[SheepJane]

You should be able to ask your Gp to refer you to the a Royal Free on the NHS. Even if you have to wait a bit longer. You may need to go more than once and the costs will soon add up

[newbe]

Hi Joel

I too managed to get referred to the Royal Free, the best decision I ever made. They took lots of blood samples and pinpointed the antibodies responsible for my scleroderma, I have limited systemic sclerosis.

I cannot see why you would need to go privately, just be persistent with your GP.

Good luck I'm sure once you have been seen it will help with the anxieties you may have.

Debbie

[Suzyannayoung]

Hi there, I was referred to a rheumatologist from my Gp. Have to say had been going to doctors for 2years with symptoms starting with raynauds. Make sure you get the help you need now, as I was left until Scerledema,raynauds and polymytosis was very aggressive and I lost my mobility for a while. 5 years on and I'm at 50% of what I was. If only I'd have known or my Gp had more knowledge of the diseases. So don't wait. Good luck.

[Lyndabickley]

Hi

I agree with the others. I was referred to Royal Free - Prof Denton and have been seen initially 6 monthly and now annually. I had a period as an inpatient for a week at Royal Free as they were considering gamma globulin but in the end I just had Iloprost as they decided the Mycophenolate I was on was working. I am so much better now albeit with a few disabilities. I also see a local rheumatologist between appointments in London and have had further investigations and Iloprost treatment here also. I have an annual echocardiogram and lung function tests locally and take the reports with me to London which saves a long day in London where I used to have them. It all works very well and I feel well looked after with expertise from Prof Denton and his team and local support should anything be needed urgently here. On top of that I use my trips to London as an opportunity to visit friends and there is a lovely little Greek Cypriot restaurant near the hospital so I make a mini holiday of it. I suggest you ensure that you get a rheumatology referral and request further referral to The Royal Free. Best wishes . Lynda

[marcuspaul123]

Hi have my second round of iloproust treatment starting tomorrow in a lot of pain. But iloproust doesn't seem to lessen the pain y would think six hours of fluids hitting the blood stream would overide the pain? I am not a doctor! But y would think pain would be lessened?!