confused.com

katknapp

i have just come back from seeing a consultant,hes a different one from the one i have been seeing and seemed a bit more on the ball,however he told me hes not sure i now have spondilarthritis and they dont know which one i have :roll:although i have a lot of pain and my esr is very raised there is no swelling so they are not sure,apparently i tick all boxes for quite a few im a bit of a mystery!im pretty fed up in a way though as its been going on for so longand its making me doubt myself what if i havent got arthur what else can it be?? :sad:

valval

with almost 200 types it not suprising they can not give us a lable i do not know which i have only inflimation arther but it does not matter which it all they tend to treat most of them the same so it does not matter to much but i know it always a worry it would be nice if there was just a simple blood test that would tell us but it does not work that way val

stickywicket

I think Val's right, katnapp - if you haven't got one kind you've almost certainly got another. However, labels are good insofar as they enable them to treat things better. I'm sorry, I can't remember what meds you're on or if they work well for you. Where are they going from here? Do you have another appointment booked?

katknapp

well going on the questions i was asked he seems to be looking into Lopus?not sure what that is,but he asked me if i suffer hair loss and ulcers extreme tiredness etc which i do,i think and i know it sounds silly but i fear that they will say theres nothing wrong with me :shock:when i know what im suffering,i dont know if others feel this especially when you have good days then you think oh perhaps i imagined it!

stickywicket

I think we all have days when we question our own pain levels etc. It's a fluctuating thing and it's all too easy, on the good days, to start wondering if we're making half of it up.

If you put 'Lupus' into the search engine at the top of the page quite a bit of info comes up. Maybe it'll help you decide whether or not that's a possiblility in your case.

I hope you can find some answers.

frogmorton

Katnapp

You join the club with me and a lot of others - 'the great undiagnosed' so they call us things like sero-negative etc...

It is scary isn't it? l still fear l will be discharged every time l go even though they are lovely and have never made me feel a fraud.

You take care

Love and HUgs

Toni xx

katknapp

My consultant has just phoned me and said going on some of the results of my tests hes cancelling my mri scan and sending me for a bone scan...i have no idea whats going on...any clues anyone?

constable

Oh Katknapp

Do you know when this bone scan is going to be? I should think you are feeling very much in the dark. Can you not maybe ring his secretary. Only a thought. I'm sure they are only doing this to get the proper diagnoses for you.

I am thinking of you and sending you some big hugs of comfort.


Karen xx

Ankyspond

katnapp,

I hope you get this sorted one way or another, but four years ago I was told they thought I had Arthritis but not sure which type so put it down to sero-negative (when you have symptoms but not showing in blood) they said it could be Ankylosing Spondilitis cos of X Ray. Anyway took them nearly three years to decide I do have AS, now I have a label it doesn't make it easier and we all have good and bad days.

I would phone the secreary and ask to know why you having the scan, can't leave you wondering like that.

Wishing you well, let us know what happens. xx

traluvie

Hi Katnapp.

My tests were inconclusive when i first started symptoms.. i was sent for a bone svcan.. they inject dye into you, doesn't hurt, you then wait for an hr for the dye to work round your body..You will then be put through a scanner similar to mri scanner.. if there are problem areas the dye will gather and will be seen on xrays..Mine showed inflammatory arthritis and OA..but i too have no definate diagnosis..This scan should hopefully give the doc more answers..