Waiting for the diagnosis...

Pherstun · 31. Mar 2011, 15:41

Hi all

I saw the rheumatologist for the first time 3 weeks ago and have to go back in another 3 weeks for the results.

She did various prod/poke tests while I was laying down and I realised how much my joints actually hurt. I explained how I felt and the supports etc I have to use to walk, and she said most of what I said made sense (which I said I was glad to hear). She said it's not rheumatic... yet (her actual words and pause!).

She sent me for various blood tests and an xray, and also gave me a two page questionnaire for ankylosing spondylitis to see how much pain I have and how I manage with different situations. Not sure if she suspects this is what I have but if so it's not the only thing since I have problems with practically all my other joints! I do seize up though and have to do exercises to get moving in the morning.

I am due to see the physio on the same day as the rheumy appointment, and have also been referred to the podiatrist. I have flat feet and already have NHS orthotics but she thinks a lot of my lower limb problems are caused by this so more advanced ones should help.

No point in my trying to surmise really but I am very worried that I have AS, I can deal with pain but not lack of mobility. I hate having to walk with sticks, I feel everyone is looking at me, and I miss holding my hubby's hand when walking (my mum had osteo and she said the same). The only upside is that I always get a seat on the bus! (although I occasionally have to ask for someone to move)

To be honest just putting all this down in writing helps, although I am also getting myself upset a bit at the same time. I keep my fingers and toes crossed that I can be treated relatively easily... and keep remembering that I've had problems with my joints for years and I have managed fine until now. It just doesn't seem fair on top of all my other health problems. I am glad I can share this with others though who know what I'm going through, it does help.

Debbie

rugbygirl · 31. Mar 2011, 15:55

Hi Debbie

I am sorry to hear that you are feeling down at the moment. I can sympathise with you not knowing what is happening and what is actually wrong with you.

I have only recently been diagnosed with OA of the spine and I have had my ups and downs. I wasnt sure about anything and AS was mentioned to me before the diagnosis was actually made. My dad has AS and although he walks slow he very rarely uses sticks.

I have to use a stick at the moment as well although it is only one. I found it difficult to juggle the stick, my bag, door keys and anything else that I needed to even get out of the door.

I got a bag which goes across my body so that I can easily access everything I need. My stick is in my left hand and then if I need extra help my hubby is my support on my right hand side. I can link my arm through his and he walks slowly with me.

Physio is good for AS according to my dad and anything you can do to keep mobile is also good. I have taken up swimming to help my back. So far it has helped and although it hurts for a while after I get out of the pool I do find it easier to move.

Drugs are also a good thing. They do help and if you take them dont think you are just taking them because you have been told to. Take them and remember that without them you will suffer.

I hope things work out for you and you get the results that mean things can be treated easily.

jennylynn · 31. Mar 2011, 16:02

Hi Debbie,

I'm sorry that your appointment didnt go as well as you expected. I have PA and AS - and i scared myself like you wouldnt believe looking up AS on google, and all manner of other places. As far as the poking and prodding goes - only rheumys and rheumy nurses have the knack of finding joints that didnt hurt until they started poking them - i think its part of their aptitude test

Will keep everything crossed for you that you get some good results soon. Try not to worry too much about the AS - barely notice i have mine

Do keep updating on how you are doing,

frogmorton · 1. Apr 2011, 10:12

Hi Debbie

HUGE hugs form me for you.

As you said yourself....whatever it is you have been 'dealing with it' for a very long time. Think hubby needs to hold your hand anyway walking aid and all

If it is AS or any other infamatory arthritis then you will be likely to have similar medication and it should help.

Sounds as though you have a lot going on with physio and podiatrists too :shock: That's good and to be honest....fear of the unknown is far worse than the reality.

Lots of love

Toni xx

chris7 · 1. Apr 2011, 10:38

Hi Debbie

I can't advise but just wanted to let you know I am listening and I hope you did feel better for getting all this down. I hope you get some effective treatment and answers soon. Let us know how it goes?
take care
Chris

barbara12 · 1. Apr 2011, 12:33

Hi Debbie
I am a great believer in talking about things and getting them off your chest, I am glad you have found us lot, it really is lovely to support one another.
Like the others have said the meds should be the same, I was like you when I first started using my stick, but all that has worn off now, I have even jazzed it up
I do wish you well with everything, and please let us know how you get on
Love
Barbara x

Waiting for the diagnosis...

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