Undiagnosed!

[Margs]

I diagnosed a friend with R & S we have the same GP she has given him inhalers and topical creams for his legs. What is the worst case scenario that can happen with this disease? I am also helping him with DLA going to tribunal on the 6th Sept. So we need more information to help him get a better treatment if the GP won't even diagnose it. This is a failure of the medical system here again. Thank you in advance for information and advice.

[Bee346]

May I ask WHERE you are?

[Margs]

Berkshire, Bracknell

[Margs]

I just spoke to the GP asked if she could do tests to see if he has the skin condition, she will get back to me, should this test have been done with the diagnosis of Raynuad's disease?

[zenabb]

Raynaud's disease is a registrable disability. Your friend needs to be referred to a rheumatologist to have the tests, the diagnosis and the treatment. Raynaud's and scleroderma cannot be cured but the symptoms can be relieved as far as possible. It is not a well known disease and much expensive research has to be done. We owe whatever research has been done to the existence of the Raynaud's & Scleroderma Association who are having difficulty collecting the necessary funding. They have encouraged much research into this complicated disease.

[Bee346 in reply to zenabb]

Interesting information zenabb...and just as I had suspected re disability. I have just seen rhematologist for tests .....there were some raised levels of ANA but he poo-pood them and said there was NO medication/treatment for Raynaud's even though I have had Niphedipine (sp?) in the past and my GP has changed it to Losartan!!!!! I am a bit frustrated....when I told rhemy that I was reasonably ok at 20degs warm weather temp. he seemed to think that was a funny comment. Any ideas as to what I should now do. I do have other long term conditions.......

[zenabb in reply to Bee346]

That does not sound a good rheumatologist. Is there another one you can see? 20 degrees is good for me too, but when I get too hot I have an ice cream (very nice round here) and get too cold and have to have a hot drink. So although it's better at 20 degrees it is still a bit dodgy. I suggest you look up Raynaud's and Scleroderma on the internet. You will be inundated with information. I have nifedipine for my Raynaud's and diminish it in the summer, ready to increase it again if my extremities turn blue.

[Bee346 in reply to zenabb]

Thank you for your reply zenabb. I'm in Cornwall and we dont have much choice of medical specialists in many disciplines! so I doubt if I can get another opinion locally. i have looked up raynaud's but got totally bogged down by the huge amounts of info. I do find RSA very helpful so I may just write and ask them if they know of anyone else I could ask to see around here.

[AliW in reply to zenabb]

Hear hear !yes big thanks to the RSA they are fantastic - :)))

[Margs]

Thank you Zenabb I have just done so hopefully he does not have Scleroderma for his sake and his wife who depends on him.

[zenabb]

Even if he has scleroderma it does not mean that he can't help his wife. Best wishes.

[AliW]

Hi All , just reading through I noticed Zenabb comment re: disability registrable - can you tell me what that means? I have had CREST for 8 years I have not heard of this before & would kike to know more.

Many thanks ..... have just posted a question about myofascial syndrome ....does anyone suffer with this & have had it suggested it is connected with my CREST ?

[zenabb in reply to AliW]

Contact the RSA and ask them. On the othr hand you could go on the internet and ask for registerable diseases in the UK. Being registered means that you can get a parking permit and not pay VAT on special shoes. It does not mean that you are so diabled that you cannot work.

[Margs]

I was investigating the H. Pylori bacteria and came across that this could be a cause of Raynaud's Disease or make the symptoms of Raynaud's much worse, I forget so do please check on this and if appropriate ask for a simple test and please spread the word, it could help many people.

[Margs]

The doctor is going to test my friend with Raynaud's for the H. Pylori bacteria as we both spent many years in Africa where it is more prevalent. They are not sure what spreads the bacteria recently the blame lies with a type of fly so it's easy to get especially if you have travelled to exotic places. There are only about 7.5 Million people in England with the bacteria.