Diagnosis change!!

CJHunter

Hi all,

Has anyone got any suggestions of questions i can ask my consultant after he has decided i no longer have P.A (12 yrs diagnosed & treated for), to some sort of chronic pain but unsure of what it is diagnosis??

Has done my head in to be honest, dont like having a diagnosis but having a name seems to help i suppose.
Am going to call him tommorrow with questions so please let me know your thoughts.

Thanks
Clare

minky67

Hi Clare, cronic pain is pain thats lasted for more then (pass) so many months.
I have fibromyalgia & thats also classed as cronic pain.
I would ask him to explain it to you what cronic pain is & the treatment plan for it.
Im under the pain clinic & have had several steriod injections which help a little.
I think someone else will be along shortly that can explain things better.
My heads somewhere else atm sorry.
debs

dorcas

No wonder you're confused ! I would be too.

If it were me I'd ask what led him to the chronic pain 'conclusion' (as it doesn't sound like a diagnosis) ....
and also what signs/ symptoms of the PA you'd been diagnosed with, have changed... or disappeared. :shock:( Presumably they diagnosed PA on blood results and/ or characteristic x-ray findings / family history of Psoriasis ?)

I'd ask what treatment is now being suggested and what other tests are to be carried out to give a definitive diagnosis.

I know that sometimes we get a 'temporary' diagnosis if symptoms aren't too clear and while the rheummy's investigate further... but after 12 years that seems just a little bit too long to me. :roll:

If I think of anything else I'll post again... but I'm sure others will be along soon to offer additional questions for you to ask.

Iris xxx

CJHunter

Thanks to you both. Its just nice to know there are people out there and are able to offer support.
I was told to post this as could get some words of wisdom.
Thanks

Clare

suzygirl

I would make an appt with the gp, to help you understand. Have you been on treatment for the PA for 12 years? If so you must have met some sort of criteria for the meds, what has changed? Have you got a new consultant?

It is an unusual turn of events and you are right to be questioning his conclusion. The only thing I can think of is that he thinks the PA is inremission and you are suffering pain from the damage????

I wish you well in trying to get answers.

CJHunter

Hi, Ok I have app with G.P on friday as he wants an update anyhow. I have been on meds for P.A for 12years and yes I do have a new consultant.
I think you have a good point there, another question to add to my list.
Thanks ever so

Clare :???:

woodbon

Hi Claire, I've had several years with out a proper diagnosis, so I can undersand a bit, how you feel. I know its said that having a label doesn't make the pain go away, but it does make you justified and know what you're fighting, I like labels too.
I hope the GP appointment will help you get a bit nearer the truth of the matter, even if you need more tests and visits to the hospital. So see you on the hospital merry-go-round!
Seriously, good luck with the GP and I hope all gets sorted out for you. Then you can maybe have some treatment that works for you, because you are wearing the RIGHT label! Love Sue

CJHunter

Hi Sue,

Sometimes labels are a good thing, at this moment in time I would like one to know where im coming from, and what im facing. Dont think thats too much to ask in this day and age is it??
Merry go round has been going for sometime now and feel its my time to get the break and be allowed off.
Am tired of fighting for stuff and only want to feel ,well, 'well', but dont see a life without pain at mo and have moments when its hard.
Will be talking long and hard when I see GP, he does at least listen and keeps coming to these locked doors the same as me.

I will get there, just wish it wasnt such a battle when the energy I have I like to do things I enjoy.

Thanks for support
Clare x

CJHunter

Morning, well here goes, am sitting at G.Ps waiting to be called in. Lets see what he thinks .......

Will post outcome later.

C xx

Poppyg1rl

Hi Clare,
Thinking of you and hoping that your GP appt goes really well and you're on the way to getting some answers re diagnosis finally!
Best of luck X

ritwren

How did your appointment go, I hope it went well for you.

julie47

Hi clare

Miissed thiis thread but atleast I caught you sat in the gps
I am the one wriggling about trying to get comfy in your pocket.

Hope your appointment goes well and that you get some sort of diagnosis so that you knoow what you are really dealing with

Take care & good luck
Juliepf x

CJHunter

Hi All, thanks for kind words, have only just got out. Felt the good vibes in my pocket Julie
He believes that I was poss miss diagnosed as consultant no 4 is still sitting on the fence, he believes I have fibromyalgia and has read new tldiagnostic test and thinks its wise to see a specialist in that area.
My consultant says he is not ( as g.p said its a rummy cod so isnt that his arrea??)
Anyhow does anyone know a consultant who specialisesin fibro??
Will travel all over, have heard that there is someome at guys, does anyone know??

Thanks all
Clare.xx

CJHunter

Well letter from consultant has come through. He has discharged me because he is now saying I Dont have an inflamitory condition but a Chronic Pain one so its not rhummys criteria.
Oh dont you just love them.

Why am I on anti inflamitorys then :?:
Think I must be a medical wonder to have P.A and it to be gone, can it go into remission ? Wonder if I didnt have the reaction to meth as I did would they be saying this???

Oh so many unanswered questions.....

theresa4

My rheumy consultant is in West Yorkshire and she specialises in fibro as well as general and biologic rheumatology. And is very nice but posibly a bit far for you ?

I think I pre empted this myself when Ichanged consultants as the one I had was a B**** and was trying to dismiss me but I think Over costs as Id had 4 biologics with no good response.

I asked to be changed.

Theresa

CJHunter

Hi Theresa, can you P.M me with details of your consult. Am willing to travel to get diagnosed and therfore appropriate treatment.
Thanks
Clare xx

Mat48

I'd go a long way for a good rheumy I liked and trusted (or had been recommended to me). Don't know how they can just sock that one at you Clare. They put you on toxic meds for all those years all for nothing? Not of course that fibro is nothing - it's a serious chronic illness but it doesn't get treated with DMARDs or biologics does it? I felt a bit fed up after my GP took the unusual step of putting me on Sulphasalazine - which I had to come off because I came up with a rather violent all body rash. Then after the certainty of my GP's belief that this is RA came the rheumy's uncertainty. By which time I'd had 3 months to get used to the idea a bit. Not the same as 12 years of believing you had PA but still a roller coaster for me.

My rheumy made it clear that he disapproved of my GP and the sulpha as far from certain that I actually have RA. But increasingly it feels as though we are kept in limbo for financial reasons - the drugs are expensive and its easier to take a chance on us disintegrating slowly or getting better I guess - since the older we get the more we are going to disintegrate anyhow as OA gets us?

I'm grateful that my GP stuck his neck out as he wanted me to be covered for the time he knew it would take for me to see a consultant. I know GPs are finding it increasingly hard to deal with consultants who leave everyone in limbo - waiting and waiting. There's a desperate shortage of rheumatologists in the UK because there are never enough trained to begin with. A doctor friend told me it was the specialism she would find least rewarding because it's so underfunded and there's so little that can be done for chronic arthritic conditions apart from dole out the pain meds.

Sorry I feel like the voice of undiagnosed gloom :x - but can see it must be even harder when you've had a diagnosis and it's been undone and you've been left high and dry with something very different.Good luck and hugs. Mat x

CJHunter

Thanks Mat apprechiate it. Yr not the voice of gloom just of how it is. Have said a lot more gloomier things than that.

Will get some result eventually. Just hope whatever it is is taken seriously and am listened to so it can be managed correctly.

Trying to think positive is hard at times.

My mantra , I will get there, i will (now just gotta believe it!!

Clare xx

liesa

i have had chronic pain mentioned before then nothing... they sent me to a pain clinic was offered and tried a anastetic block or something like that , we went for it but it was so painful couldnt go ahead with it then no one did anymore... always fobbed off!
hope you soon get a decent diagnosis, xxx Good luck xx

CJHunter

Well of to drs today at 9.30, Have got the name of the consultant i want to see and all g.p has to do is write the letter.

In a twist of fete i have been contacted by dermatology who are putting me on cyclosporin next friday, well if it is p.a i have it should help that too,lol

At the same time will ask dr for some knock out drops, very bad sleep probs at mo with pain. Need more than 4hrs broken sleep :roll:, or is that just plain greedy

Wish me luck

Clare xx

ritwren

Good luck, hope it goes well for you.

suzygirl

Hope it goes well for you

CJHunter

Thanks

salamander

Hope it goes well for you today. Let us know how you get on.

frogmorton

Thinking of you today Clare.

I am pleased about the new meds and hope you get your letter.

Love and hugs

Toni xx

CJHunter

Will let u know.
Cant go on feeling like this and not getting anywhere. Have had enough fighting for the right treatment :sad:

X