Whats wrong with me?

woodbon

Hi, I've just been going through the reports that my GP has given me from the hospital, as I have to go for ESA re-assessment

One of the letters to my GP from the last Rheummy consultant I saw, who is the head of department, (but not a very nice person to talk to). In the letter he says that I am HLA B27 positive although all my other results are normal. Of course, the first thing I did was google it to find out what it means and I got a suprise! In his letter to my GP he states that HLA B27 is Positive in my blood test. He says that this is the case 7% of people without AS, but in his opinion I do not have a spondylathropy, (sorry, spelling) but, that is a very high number in any experimental situation, or so my research biochemist husband says and all the symptoms seem to fit.

I was told I have OA of the spine, the old 'wear and tear' as the hospital puts it. I really would like to know as the medication is different. The rheummy laughed when I told him my mother had severe AS and said that I must have got it wrong, but I know I haven't and people with HLA b27 can pass from mother to daughter, apparently. I'm not sure what to do. Is it that important to make a fuss about, or will I end up looking silly.
Sorry for such a long, boring post. Had to tell someone!!

skezier

Hi Sue,

Its not long or going.. i do them!

I don't think it is unreasonable to want to know what the actual diagnosis is and with the blood results and the family history it might well be AS. The thing is what you have to remember is that you are already doing the exercises so helping the back already.

I know they give drugs to help control it all and thats another reason why I think they need to come up with a sure diagnosis. If your bloods arent enough maybe they could just cover you with the drugs in case?

Is your back fusing up at all? Mine is but they tell me its oa and the extra bone but I wonder and have never had the blood test for the AS.... they did say I have the pa in the spine as well but the oa was well advanced.

I really hope they can just tell you what you have as that helps somehow. hang in there and I hope Jerry is well now as well? (((( )))) and love Cris xx

bertyboy

sorry but have no idea about results but just want to wish you good things re the ESA re assesment x

frogmorton

Hi Sue

I am not suprised you are worried. I would be too.

How do you get to the bottom of this though? That is the question...your husband supports you? Then l would get an appt at the GPs and ask the questions....let your husband ask too.

Not nice at all a doctor 'scoffing' at your Mum's health problems :x

Love and hugs

Toni xx

woodbon

frogmorton wrote:

Hi Sue

I am not suprised you are worried. I would be too.

How do you get to the bottom of this though? That is the question...your husband supports you? Then l would get an appt at the GPs and ask the questions....let your husband ask too.

Not nice at all a doctor 'scoffing' at your Mum's health problems :x

Love and hugs

Toni xx

He laughed and said she would had it when she was a lot younger, but as I was upset, I forgot to tell him it was diagnosed when she was in her late teens, at a London hospital, they wanted her to lie on her back for ages but she refused (the treatment in those days for any back problem!) She very slowly got worse all her life.

dreamdaisy

I don't have a clue, woodbon, as I am not a doc. Do not be afraid to stand up to your rather insensitive consultant, he has one major problem about which he can do nothing: he is a bloke, and blokes often don't communicate that well on a more emotional level. He is only a human being, he is not - despite what he and his adoring coterie of nurses may think - a god of any sort. Sit there, imagine him in his pants (honestly it works, it reduces the scare factor by a huge amount!) ask him questions and tell him the stuff he needs to know. Oh and take Mr Woodbon with you when you do this, if you are able. Another physical presence often puts these abrasive and scornful docs in their place. I wish you well and I hope you soon get some answers. DD

penny44

First Sue your post is not long or boring.
i don't feel you are making a fuss I would feel very anxious if I were in your shoes, not because of the results but because of the uncertainy of what they mean.
I would push to find out the significance of this result, i seem to remember your GP is very good, perhaps you could start with her and explain about your Mum and if she feels you should have further tests or a consultant review she could arrange it.
Whatever the results mean they are about you and your body it is not wrong to want to know more.
I truely hope the results mean you should be monitored for AS and not that you have the condition but whichever it is easier to deal with things you understand so go get some answers. Luv Penny

julie47

sue , sorry I don't understand your results so I don't have any advice.

I just want to say good luck with the esa appointment.

Juliepf x

claircoult

I have Reactive Arthritis and I am HLA-B27 positive. I'm not a medical professional but from what I've read on the internet 7% of the population have the gene and it means you have an increased risk of developing an autoimmune condition.

barbara12

Hi Sue
First of all good luck with the ESA, has for the rest you must stand up for what you believe in, some of these consultants and GPs dont do listening.
Good luck with it all we are all behind you.

chris7

Hi Sue

I can't advise but just wanted to let you know I am listening and yes do make a fuss and ask the relevant questions until you get an answer that kinda makes some sense to you and your symptoms. Hope all goes well with the ESA too.
take care
Chris

woodbon

Hi, Thanks for the replies everyone. My GP is very understanding and I will have to talk to her. Even if it makes no difference at all to my treatment it is important to have some idea. I'm the sort of person that needs to understand whats going on and then I cope better. I know any arthritic problem is hard for the medics to diagnose exactly, it takes time and patience.
Basically I want to know if what I've worked out is a load of illinformed rubbish or something that is real. Love Suexxx