Letter from the Hospital

woodbon

Hello,
I've just opened a letter from the consultant it reads:
"Your MRI scan has shown changes consistant with inflammation of the spine but no active inflamation at the moment. Sacroiliac joints normal, which is reassuring. bla bla bla diagnosis is fibromyalgia.'
I carry the AS gene, which my Mum had and I was laughed at when I told another consultant that Mum had this. He said she couldn't have done. WHY NOT?

I feel strange, sort of glad that something has shown up tangible at last worried as my Mum had AS and I know from bloods that I carry the gene.
I'm really glad that I'm seeing my GP on Monday as she is careing and will make me feel better just by talking to her. She herself has a long-term illness that keeps her off work for several months and she only works part-time, but I think that helps her understand how people feel.

Well, just thought I'd let you know.
Love Suexxx

dachshund

Hello Sue
That's why you've had so much pain lately I don't know anything about fibro sorry.
i'm pleased you have a nice doctor to speak to.
take care
joan xx

bubbadog

Glad you got a letter with the results, now you have some idea of what's going on, as well as having it in a letter. I'm sure when you see your G.P you will be able to discuss what the next steps are and find suitable medication to help you. Let us know how you get on with your G.P please.

DebbieT

Hi Sue,

Fibromyalgia sucks!! It's finding the best balance you can between pain & quality of life ... Pacing is the name of the game!! Meds such as Gabapentin/Pregabalin are often used with the best results but like with most things it's trial & error.

The best advise I can give to anyone newly diagnosed is to try & sort ure sleep out first. If you can get into stage 4 sleep it will eventually start to lower ure pain levels or at least how much pain you can cope with!!

I've no idea why ure rheumy is dismissive of ure Mum having a positive AS gene marker ... It seems an odd thing to be dismissive of to me!! :?
Personally I'd try & focus on the fact that the MRI has shown changes & that they're aware of it now & try n let the annoyance go!! It's almost a waste of energy & if it can lead to stress then it's not worth holding on to ... Like with arthritis FM is very very much at the mercy of our negative emotions.

Take care.x

villier

Sorry Sue know nothing about fibro, I am very glad you have a compassionate GP hopefully she will make you feel a bit better on Monday....................tc................Marie xx

woodbon

It's just so confusing, I'm not patient and I will have to be. Fibro dosn't cause inflammation like that. They were ruling out any sign of AS. Oh well, it'll sort out in the end! I will let you know.
Love Suexx

DebbieT

I'm sorry .. I thought they'd confirmed ure AS as well as FM. Ure right that it isn't supposed to raise or cause inflammation but I'm afraid in practice it can & does :? It's a mine field.x

woodbon

Thank you for reading my moans. I think they have confirmed AS as well, but I'm not sure.

I'm going to try and forget hospitals and doctors until I see my GP on Monday. Its no use worrying and letting it take over my weekend, really the cause doesn't matter, its the coping that is important.

Love Sue

DebbieT

That's absolutely the attitude to take Sue x

frogmorton

Hi Sue

sorry I am late on. Just wanted to say I am thinking of you and yes TRY not to worry - you know it's not good for you.

Glad you are planning on having a good weekend and that you will see your lovely GP on Monday.

Take care and ((()))

Toni xxx

Starburst

Hi Sue,

From the wording, it sounded like there are changes from inflammatory arthritis of the spine but there is not active inflammation at the moment i.e. you were not in a flare up at the time of the scan. That's how I read it but obviously I am not a doctor, so take that with a huge pinch of salt. Translating contradictory medical terminology is not easy! Good luck with seeing your GP, hope she can translate into English for you. I know it's easier said than done but try not to stress too much about it. We are all here for you, please keep us updated and it's nice to see you around again.

x

janie68

Hi Sue,

Just to say good luck for seeing your GP, hope you get some clarification on the report.

Janie xx

kellerman

I have AS and so has one of my daughters. It will sort itself out as my daughter was told she didn't have it to begin with and me having it proved nothing.
She has now been told she does have it which to be honest we already knew.