How long from symptoms till diagnosis?

traluvie

I am curious as to how long it took for people to get a diagnosis from seeing doctor with your symptoms to diagnosis.
I have only been experiencing problems since sep and am waiting a diagnosis, but i believe with some people it has taken yrs for doctors to get an accurate diagnosis??
Love to hear from others..xx

mellman01

For me it took a long time as my old GP told me it was gout when it was OA of both kneecaps, from first seeing him till OP took around 2 years for me but then again as I said I sort of fell through the cracks, when I did have a scan I thin put the OP off for a further 9 months which was a bad idea as it made things much worse as I tried to just carry on as normal, bad idea!.

traluvie

2 yrs is a long time... i am not going to moan anymore as another lady i spoke to said it took 9 yrs...
so looks like i need to be patient lol... i am just eager to get back to work at the moment i have no chance..
Mellman ... what tests did you have done and what was the test that gave you the accurate diagnosis in the end??

flower12

Hi I am new to this so please bare with me. It took two years of various appointment with different specialists as I have many symptoms which of course took me in different directions eg my feet were horendous I could barely put my foot to the floor, then my elbows began to burn I couldnt pick things up easily anymore, my knuckle hurt so much it reduced me to tears on occasions all this for two years berfore even seeing my gp, when I finally did go my bloods were a high positive fo RA.
So the rheumy appointments began, from then on it took another two years before a definate diagnosis, although i have suffered greatly both physically and emotionally I would rather to have an accurate diagnosis than a quick fix one as the treatment for RA is abrasive.

dreamdaisy

GPs and RA are mutually exclusive. The meds are abrasive? What about the disease? It's hardly gentle - something that rotten has to be knocked on the head very, very hard. Having said that, the meds don't always work that well. That is one of the biggest problems, I think: we all react so differently to, what is apparently, the same drug. I know that my hospital brews its own methotrexate, every Monday, in the bowels of the hospital. Is the meth I recieve from them the same as other people's? I just don't know. DD

skezier

Hi Flower,

I love your user name We use flower a lot here as a term of care really so welcome Flower Nice to meet you. Cris x

Hi Tralvie,

I think this one s a bit like how long is a bit of string My oa was instant cus it came up on the xray.... the pa..... it was ignored for years. They did keep saying I had ra hands but the bloods said I didn't so they just got ignored.

I just wondered are you having problems getting the help you need so asking how long for that reason? Anyway ice to meet you and hope your doing ok? Cris x

traluvie

Hi flower... i'm new too, but even though i have been on here just 2 days i have had alot of my questions and reasurances answered.. for that i am grateful and i'm sure you will find the same.. evryone is very helpful... xx

Hi cris.. too be honest raeding evryone elses stories i am being very impatient lol... I'm just curious as i am new to all this and have been off work since sep and am really trying to get back to normality, but the looks of things i'm expecting too much lol..
So i reckon i'm just gonna go with the flow and see what happens.. although April when i am next due to see the rheumatologist seems so far away...
Positive thinking though... so chin up lol

RA2010

Hi Traluvie - I'm quite new here too, but I have to say if you've had symptoms since Sept with no treatment I really feel for you! What tests have they done? Have you seen a rheumatologist?

It seems by this I've been really lucky - I have RA and SLE both diagnosed by positive antibody blood tests (RA was pretty much diagnosed just by my symptoms at first rheumy apptmnt as he said it was quite obvious). First symptoms were only in August and came on quickly - for first 3 weeks I had serious inflammation in different joints each a week apart and lasting for a couple of days each, then after week 3 the inflammation was every day and each day in a different joint - pretty soon it was more than one joint a day. I first went to the doc after the first week of the pains moving around every day (mid Sept), he got blood tests done immediately which showed some positive things so referred me to rheumy who I saw at start of October. He said it seemed pretty much like RA but requested some additional blood tests and xrays. Blood tests came back being positive anti-ccp (very specific for RA) in the additional tests so confirmed diagnosis - so was diagnosed by mid-Oct, 2 months after initial symptoms and 1 month after first doc appointment!

Guess I can consider myself very lucky - good luck with it all and hopefully you get medication that starts to make a difference soon!

traluvie

Hi RA2010,

I have had bloods, xrays and ultrasound.. some bloods were normal, others were borderline.. my xrays were fine and ultrasound showed no clear swelling..Rheumatologist says my symptoms are of inflamatory arthritis but tests are not confirming that.. I am now awaiting my appointment for bone scan, am hoping that this will show something so that i can get a diagnosis and start right meds..
I had a steroid injection 22nd dec which has helped alot although the pains are still bad.. i also take tramadol and diclofenac..
Your story is so similar.. mine felt so rapid too(my story is at top of page) i felt as if it was working it's way round my body attacking me.. crazy.. now like you i can have my ankles wrists and fingers all in pain and when it bad my shoulders and neck too.. but since the steroids i don't feel so heavy achy and swelling so much so that a relief lol.. Having a bad day today which makes me think the steroids are wearing out already.. it could just be an extremly bad day that would have been worse without the steroids lol.. so i thankful..
I'm glad to hear you got a quick diagnosis and are hopefully on the right rd to helping you feel better..
Hope your having an ok day..

Tracy..x

traluvie

RA2010

Sorry my story is in the living with arthritis forum.. topic is awaiting diagnosis.. traluvie..
..xxx

elnafinn

Hi Traluvie

It did not take long for me to get a diagnosis or OA. I think it is usually more straightforward getting an OA diagnosis than RA or any of the other types of Arthritis, of which there are about 200. More recently a consultant wanted me tested for RA although for years I had been told I had OA. I was rather devastated when my blood test came back positive but on seeing a rheumi he said that I did not have RA but OA. So I was back on track with what my gp and consultants had always diagnosed. This particular consultant wanted to make sure because both my thumbs and both knees were affected and this often applies with RA.

Elna x

traluvie

Hi Elna..

I have come to notice that arthritis is quite confusing :???: lol
It is deffinately not straight forward.....
Also sounds like you have been on a roller coaster of emotions with your diagnosis an i can imagine it can be quite hard in thinking well what is it ra or oa?? The 2 do seem quite similar.. i have read that swelling in OA is not as bad as in RA and there is a difference in the affected joints?? not sure if that 100% accurate..
what were your symptoms when you first went to gp??
Are you on right medication and is it helping you now??(hope so)
xxx

elnafinn

Hi Traluvie

Yes, you are right, "arthritis" is most confusing and I have only learned that since being on this forum for three years or so. I was first diagnosed in my thirties and I have just turned 60 and am still here to tell the tale. I have lower back pain, every so often, I have a slight curvature of the spine. I suffered nearly a year with sciatica but since having injections in December 09, that has gone (touch wood). Both my thumbs look like chicken drumsticks. They do not ache anymore very often, so I must be thankful for small mercies but they look horrid and I have lost some movement in them but I cope ok. I have had both knees replaced in the last two years. The whole period from first seeing the consultant to him operating on both knees and seeing him post op at 6 weeks and 6 months, lasted five years in all. Like most consultants he told me to wait as long as I possibly could but to come back when the pain was too much. My gp referred me to the consultant. I have an underactive thyroid since having an operation at the age of 16 years so take thyroxine daily and a gammy shoulder as I fell on it a couple of times and have an inoperable massive rotator cuff tear. I have a bunion and a couple of odd looking toes on one foot, that give me gip every so often. I had made to measure inserts for my shoes, a good few years back now, which I used to use a lot and have recently started using them again as the toes are hurting me from time to time. I only take anti inflammatories now, usually one a day, sometimes two. Before the knee ops, painkillers did not ever really get rid of the pain. Personally, if given a choice I would prefer OA to RA. I initially went to the gp many years ago because of pain in my thumbs and knees, not because of swelling. Although I suffered swelling in my knees towards the end and before the ops and my legs were becoming deformed. Now my legs are straight. Add to that a recent diagnosis of IBS which has now been sorted in the main, with the aid of yet another daily pill to take, and high BP, probably caused from meds taken over the years, so another pill to pop each day now. :roll: I feel I have been let off very lightly when I read stories from many peeps here on the forum. So that is the story of my life with OA and other diagnosis's added on! Have I sent you off to sleep yet?

I do stretching exercises daily and I am sure this has kept me as mobile as I am. I ride my bicycle locally and use the exercise bike 10 minutes daily too. Life is good inspite of everything. I am grateful for what I can do.

Look after yourself,

Elna x

traluvie

Elna... you have not sent me off to sleep yet lol
I am very interested by everyones story, everyone is different but are still able to relate through various things such as similar pains , feelings and diagnosis.. This forum is great help and comfort to others..
I am amazed at how the length of times of diagnosis differs with each person, ranging from months to yrs.. for those that have to wait yrs must be awful .. i know how i feel now.. (restless at not knowing the diagnosis and not being able to go back to work).. so there suffering must be awful..
It sounds like you have been through the mill yourself but can still sound positive in your story.. that is great ..

Take care

Tracy

dreamdaisy

One thing I have learned on here - and this will really cheer you up! - is that it is possible to have both OA and RA despite their causes being so different. OA is often 'dismissed' as the 'wear and tear' arthritis but I think that term undermines the impact it can have on a person. It is a very different beast to the auto-immune versions of this rubbish, and is treated differently, but it is still a very painful condition. The auto-immune ones can be very hard to diagnose, especially if they are a sero-negative type: the main problem for me was that in the early years I only saw a GP, and not a very good one at that. She didn't recognise my fat knee as an arthritic problem, or even as problem! She refused to drain it, saying that there was no point, that it would sort itself out. I listened to her and believed her, thinking that as the professional she should know. More fool me. GPs are not 'experts' in inflammatory arthritises and they should refer one to a rheumatologist. If they do then you are in with a fighting chance of a quicker diagnosis. It's all water under the bridge now, and truth be told I no longer care about any of it. It is what it is, it will do what it will do and neither the drugs or I can stop it or control it. I do wonder tho, if I had started the sulphasalazine and tablet meth a good few years earlier, whether I would be in a very different place now regarding the effectiveness of the meds. Now that IS a waste of time! DD

traluvie

DD morning..am not gonna say gd morning as i know the mornings can be a painful time.. i had to have an extra push from my partner to get out of bed this morning.. well roll actually.. How are you this morning??
I have read that docs put OA down to wear and tear my rheumy suspected that was what i have in my knees, but have heard no more about it..
Sad to tjink that if you had received help earlier maybe your situation may be different now...Has this made you have a lack of confidence win the medical profession.. or do you think we as patients can often expect too much??
I have endometriosis and it took docs 5 yrs to diagnose, being fobbed off by diff docs.. but if they had done the obvious in the first place it would have been noticed... Be great if evry1 with arthritis/joint pain or any similar symptoms could have 1 test to confirm diagnosis... but hey that would be too easy.. we can dream though can't we .. lol

mummyb

Hi Traluvie, I was very interested to read your story, in particular where you describe different joints being "attacked" on a daily basis, as this is how my RA started. It was an awful experience and I likened it to a pinball machine, where you never knew where it was gonna strike next, this carried on for about four months, during which time I had a rheumy appointment but because I also have OA they said it was this and discharged me to physio. The tests my GP was doing all indicated positive RA Factor and everyone, physio, ot, gp, even my son in law who is a junior doctor thought it was RA. Eventually after about a year and things getting worse all the time, I was beginning to think my working life was over and all the time my rh factor was rising, all of my joints were swollen and I was in agony all the time. I went for a one off private appointment (paid for by hospital fund) Within five minutes I had my diagnosis and a prescription for mehotrexate and a steroid jab in the butt. Within two days the swelling started to go down and the pain eased, by the time the methotrexate started to work things were much better. I am now on 20mg Mehotrexate, Hydroxychloriquine, steroid jabs and 300mg Tramadol slow release and am happy to say I am currently pain free. Far from being unable to work I have had a temporary promotion and life is much easier healthwise.

Sorry for droning on but I feel there a similarities in our experience of the onset of RA and I wanted you to know that with the appropriate meds, things can be a whole lot better. So welcome to the forum and here's wishing you a happy and healthier 2011. This is a wonderful place to be and the people here have helped me immensely to cope with my journey and my experience of arthur. I feel lucky to have made some very good friendships on here, its a place to come and have a moan or to let off steam, but also to have a laugh too. I hope to see you around the forums, best wishes, Brenda

dreamdaisy

I think patients do sometimes expect too much: docs cannot sort everything with little pills and there are some conditions that cannot be cured. I have learned the hard way not to take too much notice of anything I am told, and to rely much more on MY instincts about MY body - I am, after all, the one who knows it best. I can manage the arthritis, I now know what it entails and how it feels, I know when things are not 'right' and I do contact my rheumatology team when necessary. So far, so good. There is a quote I like, it's from a John Cleese film, and it sums things up beautifully (for me, anyway).

It's not the despair. I can handle that. I can't handle the hope.

traluvie

Brenda ...
Was very interesting to read your story..
Attacking my body was teh only way i can try and describe how it makes me feel.. different from one day to the next.. now i am used to the pain and can say it has affected every joint now other that those in my face ..
I am glad to hear you are at some comfort regarding your pain..
when i had steroid injection dec i too have felt teh affects and has helped me alot..
You had injection before, if so how long did it work for?
I't seems so sad to think that people have to wait much longer due to docs not being thorough or up to knowledge on things liek this, but i can also respect that it is not an easy job to do.. and that we do have to have some patience..

It's great to be involved in such a supportive and friendly sight and i hope that although i have no diagnosis yet i may be able to help others.. even if i just put a smile on there face.. like so many of you ahve in teh past few days..

Take care
Tracy

traluvie

DD ... morning..

Love your quote.. very true..

I agree that most of us are familar with our bodies and no when something is not right.. i think though sometimes many of us(me included) can often feel that if teh pain has been going on for so long and we are not sure what it is , you are more likely to doubt yourself and think it is your head... but then you can have a real bad day and go well maybe it not in my head lol...
Although i have only had my symptoms since sep, i am slowly learning to adapt and deal with the pain and discomfort i feel and am learning what makes me feel more comfortable..

Trying to keep positive and keep smiling
Tracy..xx

dreamdaisy

Not once have I ever thought it was all in my head. Why would I? I suppose, in one lucky way, having (eventually) an enormously fat and hot left knee was visible evidence of what was going on, and I know that there are those about who love the drama of being ill and the attention it brings them (an illness in itself, tho one I find very hard to be sympathetic towards) but not once have I felt that I was making it up. I have just emerged from my shower, having discovered a small patch of psoriasis on my left knee, prettily decorating a childhood scar. The beast in me is making its presence felt, even more. DD

nanarose

Poor DD now that other awful side of PsA is acting up on you.

I was under the care of a Rheumatologist, but I still suffered for nearly 2 years as she couldn't make a 'definite' diagnosis, and didn't want to put me on toxic drugs until she was sure. I was back and forward to the docs wondering what the heck was going on with my body.
From someone who was physically very fit, did a very manual job...I worked in a garden centre so there was lots of lifting, pushing and shoving entailed in the job, to someone who could barely walk, and had to give up work.

It got so bad, I was crawling up the stairs, and I could only get up off the sofa with an assist and so much pain I dreaded moving at all.
I took diclofenac, paracetamol and eventually Tramadol, when the pain was so bad, but I was never offered a steroid jab, as my psoriasis was so bad, and covered a large part of my body.

I was glad to get a diagnosis, as to be honest, I had imagined myself with another muscular disease as I had been tested for it in years past - myasthenia gravis, as I suffered from ptosis (drooping eyelid). I had an op for that which sorted it good and proper! :P

I so wish I had been diagnosed sooner, as not only did I feel my life was on hold for so many years, but I've ended up with disfigured and painful toes, knee, and finger.
I never once believed in was all in my head either, and to be fair, my docs totally agreed with me, even to the Rhuematologist telling me that I wouldn't be on her list, if she didn't believe there was something wrong with me....she got rid of malingers pretty quickly!

But, as DD says, you have to accept the 'now' and try and make the best of things. It's hard sometimes, but a positive attitude does help.....I am alive, I can get about, and I can see my grandson growing up - lots of people don't even have that luxury.

I wish you all the best, and hopefully a quick diagnosis, so you can move on in your life, even if the diagnosis is not the best. Better to know and accept, than worry and trawl the internet on a daily basis!

Cez

Mine was about 5 months, that was party due to delay on my behalf (i thought my knee pain would eventually settle down and took diclofenac regularly rather than being in a rush to get back to the doctors) and partly due to a misdiagnosis by one of my GPs who thought my knee pain was due to a displaced kneecap! I suppose it's difficult to consider arthritis until more than one joint is affected but the morning stiffness lasting more than half an hour should have been a good indicator for her!

The most frustrating thing is that in my first appointment in July, my doctor did a blood test to check for gout, if he'd just ordered full bloods then i'd have known after a few wks of symptoms starting! Never mind!

traluvie

DD...

I apologise if i have offended you or anyone else by saying i sometimes felt it was in my head..
When i first started having symptoms it was on and off and i was unsure if it was me, normal or something was wrong.. it was when my supervisor said your hand is swollen and a few bad days that made me realise something was wrong and it wasn't in my head... Sometimes i think doctors can make people feel like there over exagerating,, although in many peoples cases it is actually how these people are feeling..
I do know that this pain isn't in my head, and i shoulod have explained myself properly in the earlier message..
again i'm sorry..
Tracy..xxxx

dreamdaisy

Don't be daft, of course you haven't offended me! You are in the early days of all this and it is a lot to understand. Arthritis can (and does) come and go in the early stages, tho when mine pitched up it decided to stay. Mine was difficult to accurately diagnose as I did not follow the traditional path of PA in any way, shape or form. I felt fobbed off for a few years when all they said was 'It's some form of inflammatory arthritis, we'll treat it as RA even tho it isn't.' That was honest, I suppose, if not exactly confidence-inspiring - mind you, with CRP and ESR figures continually around the 175 mark they had to say something! DD

traluvie

DD...
Thats a relief i haven't offended you .xx
So when doc suspects inflamatory arthritis is he basically saying it could be many types of arthritis??
I am new to this and am learning everyday.. and you are all great on this forum.. so thanks.. since sep it has been pretty constant.. eary on there were a few days when i had nothing and it would come and go.. but recently it is constant.. even if i'm not in agony all the time.. i know it's there :sad: ... the injection though has helped me alot.. i sometimes thank myself lucky on bad days, because if it wasn't for the steroids i'd be feeling alot worse...

xxxx