First Rheumy appointment - more questions than answers

littleelf

It wasn't as expected and I think I came out of there with more questions than answers. Thankfully the nurse who was taking my blood, explained what he was testing for, as he mentioned very little to me and was often mumbling things to himself.

Osteoarthritis was confirmed in my upper spine (aggravated by the scoliosis), right knee and right ankle. He said it was only a 'little deterioration' - I would have to argue the point that not being able to wear your bra for longer than half a day, because the pain is so bad, as being 'little'. Ah well. :P But he did say my twisted fingers, nodules and swollen thumb was probably not due to RA, but to suffering from premature old age, where the knuckles thicken naturally and can twist the fingers. 'premature old age' still resonates in my head. :?

He showed me my auto-immune blood tests (are these the factors I keep hearing about?) and only one of them was abnormal. He is testing me for Autoimmune Thyroid Disease and Autoimmune Tissue Disease. I kept wondering why he was asking me if I'd had any Thyroid problems; but I hadn't had any - all results come back clear. It wasn't until I spoke to the nurse that she explained one is a problem with the Thyroid gland itself and the other is the immune system attacking the Thyroid gland - which is what they are testing for now.

He also told me that my symptoms could be related to extreme stress. I don't think I've ever been as stressed as when I came out of his office!

As many of you good folks have said on here, it's a waiting game. I guess we all want to know yesterday what is wrong with us and how it can be fixed. It certainly makes you think of your own mortality though. I worry about this 'premature ageing', but what can we do except live life the best we can.

stickywicket

I can understand your frustration and puzzlement as you were hoping for answers. However, you are a little further on. It seems they are being very thorough and that is good.

'Premature old age' is a new one on me and not a particularly flattering name. (It reminds me of when Mr SW was diagnosed with a 'senile wart'. He was not amused :roll: ) I'd guess this might be a new name for the old 'wear and tear'.

Re the x-rays - there is rarely any correlation between damage done and pain experienced. I gave up on bras years ago.

So, what happens now, littleelf? Do you have another appointment?

littleelf

I am very pleased that I am in the system, I guess it was just a whirlwind of a day to wrap my head around.

I'd like to take the 'premature old age' comment as a compliment: in that he thinks I'm young for this ailment.

Thankfully it's not the end Sticky. I have another appointment for three months time. Hopefully the new blood tests will divulge the little culprit which ails me.

GraceB

Oh how annoying and frustrating for you. At least the nurse seemed to be supportive and helpful.

I hope the next appointment goes well and that you get the answers you need so you can get some treatment started.

GraceB

dreamdaisy

Ah, the world of the ideal diagnosis and treatment, I believe it goes something like this.

'Good morning, Miss Daisy, it's a pleasure to meet you and I have good news. We know exactly what is wrong with you, all you need to do is eat one orange Smartie (it must be orange, the other colours will do you harm) per day and your old life will return within 36 hours. Goodbye, our paths won't cross again!'


As far as I am concerned premature old age begins from the moment of birth: there's only one way to go after that and the majority of it is downhill. It is, however, something that happens to others and not me. This also applies to those with arthritis and other chronic conditions, they are for others and not me.

We know what we are feeling and how much of an inconvenience our health issues cause but for the professionals it's a different story and has to be. I think for them it must be similar to being presented with a million-piece jigsaw puzzle without a picture. Do you sort the pieces according to shape or colour? Where are straight edges and the four corners? Mind you, there's the classic assumption there that the picture has four corners, it might have three, eight, seventeen or none at all. Your picture is unique to you and different to everyone else's. Making sense of the puzzle is a very time-consuming process (for some of us it took years) but when we present a range of conditions it does make things harder.

I have to go on an emergency milk-run. I'd better get dressed! DD

littleelf

Thank you Grace. It is frustrating, but I understand (now) the reasoning behind it all.

DD that was so funny. Thank you for cheering me up ... I really needed that after the day I had yesterday (not only because of rheumy, and other problems, but because I'm behind on my coursework due to illness and only one week to complete :? ).

And yes, I can see what you're getting at. Which is why I kind of understand his dismissal of my OA in the spine, knee and ankle. He knows it's there. I have pain relief for it. Let's move on and figure out the other stuff going on.

Patience is a virtue, they say. I think I'll just ride that wave. The people seem so much happier there.

stickywicket

The rheumatologist 'ignores' the OA because that's not his / her problem. Your GP will deal with it. Rheumatologists only deal with auto-immune forms of arthritis so that's what he / she is rightly concentrating on.

I don't know what 'coursework' you're doing (Forgive me if you've already told us :oops: ) but I hope your tutors know of your health problems and how they are worse right now as they can make allowances / take steps to help.

littleelf

Thanks Sticky.

I'm doing specialist support for teaching and learning. It's a lot of portfolio building. But our tutor was off for six weeks due to bereavement, so there's a few of us in the same boat. Just felt like I was sinking last night. It'll all be good ^.^

theresak

It's very frustrating to come away from an appointment feeling more bemused than when you went in. Any auto-immune issues appear to be complex, meaning a battery of tests to get - hopefully- to the root of the problem.


I can understand your frustration, and only hope that now you are in the system things will eventually get sorted.

Good luck with your course work.

littleelf

Thank you. I'm ploughing through it, slowly.

I'm going to be a patient patient. And I know they will do their best to help me.

barbara12

My first rheumy appointment went like this,he did all the bloods but never explained anything and wasn't really bothered,so after a couple of years I asked for another one and got a brilliant rheumy who took time to ask questions and listen..so wait and see what is said and if you are not happy you could ask your GO to refer you to someone else..its so hit and miss seeing these consultants...I hope you get some proper soon...

littleelf

Thanks Barbara. I go back in three months time, but it will be with a different consultant I was meant to see another one, but he was sick.

The one I saw was nice enough, he just didn't fill me in on his thought processes which left me bewildered. It will be interesting to know if the other one is any different though. X

dreamdaisy

My rheumatologist ignores my OA because it is not her concern, her meds don't touch it and why would they? It's a very different beast. My GP ignores my PsA because that isn't his remit (plus he knows very little about it) but his meds (the pain relief and anti-inflammatory for the OA) can 'improve' the PsA, if one is willing to accept that the improvement is negligible. I do my best to ignore both conditions and generally I'm pretty good at doing so.

You are riding your personal arthritis rollercoaster with its ups, downs, twists and turns unique to you. We understand, however, what it's like because we're doing the same. The diagnosis process can reflect the lives of the affected: painful, slow and tiring. DD

littleelf

That's it exactly. It amazes me at how many different conditions there are out there.

I try to do the same and get on with things. No choice really when you work with children. Some days are more successful than others. But it's best to pick yourself up and wear that damn bra ( even though it's sheer torture some days). :roll: