help.

[Lucywhiton]

I was diagnosed with microscopic polangitis, Anca positive in 2007. I have been in remission on a low dose of steroids and azathioprine since. I had a relapse in Jan. This time I have pains in my chest, quite a wide area, and I get constant stabbing pains in the centre of my chest. I have had an angiogram. MRI. 2 X echo's. But nobody can tell me what can be the cause. Every time I get a stabbing pain in the middle of my chest about 3 a minute the pulse in my wrist misses a beat at the same time?. Sometimes this increases if I have done something physical.

I had a endoscopy and a biopsy and it showed I had candida esophagitis in my dietary tract and am now on Fluconazole for this. I am also on 10mg of prednisolone down from 60mg and 200mg of azathioprine. I am due to go to Addenbrooks in Cambridge in about 4 weeks. Dr David Jane has agreed to see me and he suggests I may have Churg Strauss syndrome also. I have to see the cardiologist in 2 weeks regarding the MRI I hade 5 weeks ago. And I see my rheumatologist in about 3 weeks. I can not do anything much because it only makes the pains worse. The cardiologist does not seem to be taking me seriously. I went to an health assessment in Hull 3 weeks ago regarding the works and pensions. I was getting £72 a week but they have stopped my money saying because I drove to the centre and can walk over 10m unaided can tie my shoes and get dressed myself. I can work.

PS, I am male aged 61. I have never claimed benefits in my life as self employed. This is the first time.

Any information regarding the chest pain would be helpful. JW

[Suzym2u Moderator Vasculitis UK]

We know of several cases where Churg Strauss Syndrome has been misdiagnosed as MPA or GPA. There is a very significant incidence of cardiac involvement in CSS and your cardiologist should be made very much aware of the possibility that you might have CSS. Of course CSS is very rare so he/she might not be aware of this. If you send me an email address I can tell you more about it - if you want to know!!

Sadly, your experience with the benefits assessment sounds all too familiar. You should be able to appeal against it and we may be able to help with that. So again, please send a private message giving your email address.

John & Susan

[Lucywhiton in reply to Suzym2u]

Dear john and Susan, Thank you for you reply. The tests for my heart were requested by my rheumatologist. The Cardiologist keeps saying there is nothing wrong with my heart although I have seen a report that I have some cardiac disease but he has not mentioned this to me. I don't drink and have never smoked. Thankyou for your concern.

My email is

Regards Jarvis

[Suzym2u Moderator Vasculitis UK in reply to Lucywhiton]

Hi thank you John has your email address I have just deleted your email address from your previous reply, as this post is on the group forum and not by private message

Susan

[Lucywhiton in reply to Suzym2u]

Thank you Susan.

[AndrewT]

Dear Lucy,

If you are seeing Dr Jane, or his team, in a few weeks then, I'm quite sure, that, if you explain ALL your symptoms, he will be able to help/advise you. I have every confidence, in him, and have actually opted to stay under him myself.

Please do let us know, how you get on Lucy.

Very best wishes AndrewT

[Lucywhiton in reply to AndrewT]

Hello Andrew,Yes ill be staying with Dr Jane. I have seen him once. His recommendations have not been carried out yet as the rheumatologist has been on holiday etc. But I will keep you informed. Regards Lucy.