Confused I Am - Fed Up Getting There
annebr
Member Posts: 730
Been back to the docs this morning to see about my weak positive ANA (& ESR I thought). He explained this could be an indication of Lupus. But I was to forget about it for the moment and go back at the beginning of April for more blood tests. By the time the results come through it will be nearly the end of April.
This has been going on for months now and it was before Christmas he said that there were alarm bells going off. I know that diagnosis is not quick and easy but I just feel that I go for tests and they either throw up something new, not associated or I get a weak positive/borderline and I go away and come back for more tests. Not only for the auto-immune issues but I have been attending the gastric consultant for 14 months chasing possible Chrones & imflammation.
I think I am now going to go back to the doc with my list of questions/concerns and try to speed up the process. I have a great GP but I just feel that at this point I am in limbo and would like to move a step further in knowing what is wrong with me.
Thanks for listening.
Anne
This has been going on for months now and it was before Christmas he said that there were alarm bells going off. I know that diagnosis is not quick and easy but I just feel that I go for tests and they either throw up something new, not associated or I get a weak positive/borderline and I go away and come back for more tests. Not only for the auto-immune issues but I have been attending the gastric consultant for 14 months chasing possible Chrones & imflammation.
I think I am now going to go back to the doc with my list of questions/concerns and try to speed up the process. I have a great GP but I just feel that at this point I am in limbo and would like to move a step further in knowing what is wrong with me.
Thanks for listening.
Anne
0
Comments
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Hi Anne,
You're quite right to want some answers and as you've got a good doc it's definitely worth you going to see him/ her and ask for a better explanation of what's going on...and if your doc can speed things up so much the better.
We all know that bloods can give variable results but being put off and told to keep coming back for more tests, without the docs giving you a clear idea of what they're thinking, just causes confusion and unnecessary worry.
there's nothing to be lost by asking is there?
hope you get on ok..let us know what the doc says. Iris x0 -
Only just spotted this Anne. Your confusion and frustration comes through loud and clear.
You already know what you need to do, but given everything else that you have so bravely faced recently - going back to work etc - perhaps you haven`t felt like doing it.
You need clear answers now, not in another six months. Also for them to mention possibilities, and then say forget them for now, just adds to the confusion.
Make that appointment with your GP, take your list, and put your "I`m going nowhere til I get some answers" hat on!
Much love........Ange.0 -
Oh, Anne ... this happened to me for the first three years and I just sat back and waited. Don't! Do what Ange said and put that hat on - 'I'm not getting off this chair until I get some answers'.
Wish you luck and the answers you NEED! Let's know how you get on. ((( ))))s. Keep your chin up.
Dolittle0 -
Hi Anne
It must be worrying for you to be constantly waiting and the blood tests are only borderline, which means a diagnosis is no nearer. Could they be waiting for a disorder to develop a bit more? What I mean to say is, for example, you have a blood test which shows slight inflamation, so it is decided that if it is left then when you have another blood test later, the inflamation may develop further and the results may be more prevalent. So they then can diagnose you. It sounds as though you may have to sit tight and wait.
Try to stay positive
Janie0 -
Hi Anne
you must be so frustrated with the slowness of it all
The chrohns is also autoimmune I think so I does make you wonder.
I think i'd ask for a repeat sooner rather than later incase you can have treatment sooner.
You atke care
Love
Toni xx0 -
Hi Anne,
I don't know why they have to take so long, I hope your gp will be able to help you. The gastro depts take for ever and a day and then some, I have no idea why they are so bad. This way they say its volume of patients but they really are so slow and I hope that you will get a clear diagnosis at the end of it all.
I wish I knew the answers for you but can only say I do understand and know how frustrating it gets and send you a (((( )))) Cris x0 -
Hello,
I do sympathise with you, its not an easy time. I'm going through lots of tests and things at the moment and just now I thought I wish I could just get away and forget it and everything would go away, but it won't. Good luck and I hope you soon get some answers. Love Sue0 -
Thanks everyone. Never got a chance to phone the doctor today will do it tomorrow. Have a list of questions that I want some answers to. Hopefully get a step forward to knowing what is going on with me.
Thanks again for your advice.
Anne x0 -
Just a quick update. Finnally got an appointment with my doc, harder now as it has to be arranged around work and I had my question head on. We had a good chat about what is going on with me. Conclusion is that it is Lupus or an inflammatory arthritis. he feels that this ties into the B12 deficiency/PA and my stomach problems. Seemingly there are strains that can attack the bowel.
We discussed how I was feeling and started the ball runnng with more tests general and more specific. To go back in 2 weeks to get the results & then probably a rheumy referral.
I know diagnosis isn't quick and easy but he is behind me which is good. He also thinks I shouldn't be pushed into the surgery for my left hip as i'm not ready, which I agree with. Both financially as I haven't been earning for a year, get no help and have been living off savings (mini rant) and health wise.
Feel a bit better as wasn't struck dumb this time and got my questions answerwed. Although the other patients probably weren't too pleased as i was in for 1/2 an hour. also told him about the hours I have been working and he agrees I should cut back which is easier said than done.
Overall a bit less confused and fed up. Now all I need is the diagnosis & the magic pil!
Anne0 -
HI Anne,
glad that the appointment was a positive one and that you are getting support from your GP.
******* what the other patients think of you being in for that long - you needed it! one day they might need longer too
Hope the tests are helpful and that the rheumy appt comes through quickly for you.
thinking of you
hugs
WOnky xxxx0
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