blood help please

lelesmummy

its been a long time since i posted my story on the main forum page and since then ive been very very busy with my new baby (i say new but hes nearly 9 months old now!) but i need some advice re my blood work i had done. i dont want to tell my life story again as it is on the main forum somewhere but a brief outline may help here. my family all suffer from PRA and my sisters has progressed to RA. of course its not seen as hereditory by dr's so there is no link we're just unfortunate. i am struggling to get any diagnosis. i have suffered for a long long time with pains everywhere that come and go. some lasting hours some lasting weeks. i have had every kind of blood work done and everything comes back clear. (from my understanding this is not unusal with PRA though) i have recently been back to my dr to insist on some more help, not for me but for my son. he is in a lot of pain with his knees. without insisting the family all suffered and that i wanted myself to be sorted too there was no way the dr would entertain that my son might be suffering with any form of RA.
so anyway. i had some blood work done and the dr ordered an anti ccp, which ive never had before. she said if i had anything at all it would show in this. but its come back clear. the only thing that wasnt fine was my fbc which came back as abnormal but expected? no idea what this means as im not anemic or diabetic or sick right now so what is expected i dont know?!
so my question is, what now? is my dr correct in saying if i had anything it would show in anti ccp? does my fbc abnormality have anything to do with possible PRA? hoping someone can adivse please. many thanks

helpline_team

Hi lelesmummy,

Thank you for your post to Helplines. I'm sorry to hear that things are sounding active on the arthritis front for both you and particularly your son.

I'm not able to answer some of the more technical questions as they are a bit beyond my scope. Am I right in thinking you are already under a rheumatologist? If you are feeling frustrated with the way they are responding to your enquiries I wonder what options there might be to talk to people who are medically qualified?

I don't mean to sound negative and we'd be happy to talk on the phone and hear in more detail what you've been experiencing. Occasionally during these conversations on the phone it can be possible to come up with ideas that can be helpful.

If you have a feeling that there is more going on with your arthritis that people are seeing it can help to gather evidence and keep it - in some kind of file. Dated photos if things are visible, or testimony from people such as a physiotherapist, or other individuals (if your son is of school age then maybe teachers.)

But at the same time how are you dealing with your bad days I wonder?Having a lot of arthritis puts your self management under pressure and it can feel deskilling. Gentle exercise, relaxation, pacing yourself, healthy eating can still be very important.

If you'd like a chat about how you are feeling, do please give us a ring.

Kind regards

Guy

lelesmummy wrote:

its been a long time since i posted my story on the main forum page and since then ive been very very busy with my new baby (i say new but hes nearly 9 months old now!) but i need some advice re my blood work i had done. i dont want to tell my life story again as it is on the main forum somewhere but a brief outline may help here. my family all suffer from PRA and my sisters has progressed to RA. of course its not seen as hereditory by dr's so there is no link we're just unfortunate. i am struggling to get any diagnosis. i have suffered for a long long time with pains everywhere that come and go. some lasting hours some lasting weeks. i have had every kind of blood work done and everything comes back clear. (from my understanding this is not unusal with PRA though) i have recently been back to my dr to insist on some more help, not for me but for my son. he is in a lot of pain with his knees. without insisting the family all suffered and that i wanted myself to be sorted too there was no way the dr would entertain that my son might be suffering with any form of RA.
so anyway. i had some blood work done and the dr ordered an anti ccp, which ive never had before. she said if i had anything at all it would show in this. but its come back clear. the only thing that wasnt fine was my fbc which came back as abnormal but expected? no idea what this means as im not anemic or diabetic or sick right now so what is expected i dont know?!
so my question is, what now? is my dr correct in saying if i had anything it would show in anti ccp? does my fbc abnormality have anything to do with possible PRA? hoping someone can adivse please. many thanks