how long did it take for you to get diagnosed?

mistywillow

Hi all
when reading posts i have noticed many of us have pain+ but not always accompanied by swelling or positive blood tests. So i am interested in how your Dr reached the diagnosis and how long they took before you were given meds.
Mine rumbled on for years, loads of pain, but apart from swollen fingers and 1 knee, nothing very remarkable. RF was raised but not very high. My rhemy treated me because he just felt pretty certain it was.(Plus the fact that 1 time I ended up in floods of tears on the phone begging him to give me something for the pain )
He used hydroxychloroquine to start with and pred. The former didnt do anything and now i have been on Mxt for a few years with pred, and pregabalin and tramadol( last few are for my back problems) Worked in the beginning but not so good now.
Interested in your journey though
Gillx :P

funkyhugg

Hi there! I first started getting pains in my joints (my elbow) not long after I turned 20. 2 years and many different drugs later my consultant said "you've got rheumatoid arthritis". By this point I think I already knew that, but I still found the confirmation of it very upsetting! After some more drugs and my ESR hitting 112, I was put on anti-TNF. Im now 27 years old, been on Humira for 3 years and, providing I dont push myself physically, its as if the RA never happened. I no longer take painkillers (I was addicted to co-codamol, coming off them was horrific). Other than a slightly twisted hand, you would never know and people are quite surprised when I tell them I have RA. Before anti TNF I thought my life was over and was very down. But theres hope out there for us!

bailey27

Hi
I got diagnosed by my GP. I have my first Rheumy appoitment ina couple of weeks.
I have had lower back problems since I was about 16 (now 28). 2 years ago it started becoming a problem so went to GP who didnt do anything. It caused me more problems just before christmas so was sent to a spinal physio who said there probably wasnt anything wrong but to have an MRI to rule out anything. Didnt hear back so thought everything was fine. Just after christmas I started getting purple blister type lumps on my fingers and toes and thought they were chilblains. They would come up and down so went ot GP who diagnosed Raynauds. He checked the MRI I had and told me I had arthritis in my lower back and hip (sacrilic joint - please excuse spelling). He said Raynauds is very common when you have arhtritis and that it was a resut of the wrong nerve signals and low circulation into the joints...I forget exactly.
I now have a very stiff and sore left shoulder which I am guessing is the same thing. The medication I take presently is Arthrotec 75 and Tramadol. I only take Tramadol if Paracetamol doesnt work. The pain and stiffness is still there but not as bad. I am looking forward to my appointment in a couple weeks so this can finally get sorted out and I can be put on medication to slow it down. It seems to be getting worse very quickly at the moment.

mistywillow

bailey27 wrote:

Hi
I got diagnosed by my GP. I have my first Rheumy appoitment ina couple of weeks.
I have had lower back problems since I was about 16 (now 28). 2 years ago it started becoming a problem so went to GP who didnt do anything. It caused me more problems just before christmas so was sent to a spinal physio who said there probably wasnt anything wrong but to have an MRI to rule out anything. Didnt hear back so thought everything was fine. Just after christmas I started getting purple blister type lumps on my fingers and toes and thought they were chilblains. They would come up and down so went ot GP who diagnosed Raynauds. He checked the MRI I had and told me I had arthritis in my lower back and hip (sacrilic joint - please excuse spelling). He said Raynauds is very common when you have arhtritis and that it was a resut of the wrong nerve signals and low circulation into the joints...I forget exactly.
I now have a very stiff and sore left shoulder which I am guessing is the same thing. The medication I take presently is Arthrotec 75 and Tramadol. I only take Tramadol if Paracetamol doesnt work. The pain and stiffness is still there but not as bad. I am looking forward to my appointment in a couple weeks so this can finally get sorted out and I can be put on medication to slow it down. It seems to be getting worse very quickly at the moment.

Hi Funkyhugg and Bailey
Funkeyhugg that's :P great to hear!! Really nice when the meds work. That will give hope to a lot of people on the site i'm sure.

Bailey hope you get on well with your appointment at the rheumy and that your treatment is as successful as funkeyhuggs'.
Take care Gillx

page35

funkyhugg wrote:

Hi there! I first started getting pains in my joints (my elbow) not long after I turned 20. 2 years and many different drugs later my consultant said "you've got rheumatoid arthritis". By this point I think I already knew that, but I still found the confirmation of it very upsetting! After some more drugs and my ESR hitting 112, I was put on anti-TNF. Im now 27 years old, been on Humira for 3 years and, providing I dont push myself physically, its as if the RA never happened. I no longer take painkillers (I was addicted to co-codamol, coming off them was horrific). Other than a slightly twisted hand, you would never know and people are quite surprised when I tell them I have RA. Before anti TNF I thought my life was over and was very down. But theres hope out there for us!

wow that has given me hope for sure.
ive had pains for coming up to a year now, went to docs for pains in foot was told get new shoes. went back when pain spread was given pain killers and blood test, was told your fine. kept going back until was ref to rhumy, who done more tests and told me two weeks ago i have an anti body that meens i have RA. finding this very difficuit to deal with but this forum is helping.

page35

Hi Gill
You were the first of many lovly people to reply to my first post.
THANK YOU
Page

averyniceman

wow that has given me hope for sure.
ive had pains for coming up to a year now, went to docs for pains in foot was told get new shoes. went back when pain spread was given pain killers and blood test, was told your fine. kept going back until was ref to rhumy, who done more tests and told me two weeks ago i have an anti body that meens i have RA. finding this very difficuit to deal with but this forum is helping.

[/quote]

Tell me Page35 -- how is the rheumatologist treating you?

mistywillow

page35 wrote:

Hi Gill
You were the first of many lovly people to reply to my first post.
THANK YOU
Page

Hi Page
how are you getting on??
GillX

page35

Hi averyniceman (do you work for the AAA or RAC?)
i was give injection and started taking Plaquenil.
i read a post you put on another thread about treating RA aggresively im going to look in to that as off course we all want the best treatment. im still getting my head around the fact that i have this at the moment.
a few people on here have or are taking Plaquenil and it works for some, may be its just what meds work for each person.

page35

mistywillow wrote:

page35 wrote:

Hi Gill
You were the first of many lovly people to reply to my first post.
THANK YOU
Page

Hi Page
how are you getting on??
GillX

Hi Gill
am still finding it tough but am going away for a few days tomorrow so hoping that will cheer me up abit. i get good moments and then bad ones where it feels like the future me i had in my head has died and then starts the crying again, and still not really sleeping much but so tired.
sorry now im moaning.
anyway i will enjoy myself kids will make me.
hope your well
Thanks again
Page

skezier

Hi Gill,

Now there is a question....... For my oa 18 years........ for the crohn's 32 years........for the circulation thing 40 years........ and the other 3 things are probables even after 10 years! It just depends eh? My present Rumo is the only one who has ever been quick to look and find out. x

Hi Page,

I know it's very hard in the start but the future may be a lot better than you see it as just now. ((())) 4 you and enjoy your self. x

eckstardeluxe

Hi Gill, thanks for that post, it is really interesting reading about everyone.

I had my son last April and afterwards started getting really bad sciatica and back pain. I had a bad fall at home and went to the Doctor. He didn't seem very concerned but gave me Tramadol and diazepam for the spasms in my back. When I said the pain was very severe and similar to Osteomyelitis I'd had as a child he was very shocked and asked me if I was really sure I'd had that as it is very rare. I said yes and an epidural abscess. Immediately on hearing this he said I must be xrayed right away and was sent to the Hospital. They said I'd hear in 2-3 weeks but when we got home the phone was ringing. It was the Dr to say something was wrong. I was sent A&E and had an MRI the next day. I got my full diagnosis a couple of months later.

All in all it was about 12 weeks but during the diagnosis I was told it was all caused by my childhood illness. The disease invades your bones and sometimes they heal but alas mines never did. I always had very bad back pain but have quite a high pain threshold and just got used to it. I was 32 when I found out but had my illness at 12 so it took me 20 years to realise.

noeltone

Hi eckstardeluxe Ive been a lurker with arthurititis from young age first had arthur when I had JA at 13 but then it came back with vengence in 1989 OA and then RA was diagnosed

munglebungle

Hi Gill

My journey has been long and painful, i was first aware of stiffness in the morning and night sweats in Nov 07, I put this down to my age. Then in January 2008 i had awful pain in both wrists and arms, also my hands were really stiff - this kept me awake at night and had to regulary get up in the night and take Ibuprofen just so i could sleep. After a few weeks i went to see my GP who diagnosed RSI and signed me off work for 2 weeks, she also arranged some blood tests. Suprisingly the RF test was positive but borderline. My symptoms werent improving so i was referred to a Rheumatologist.

My appointment came through for March 08 - at this appointment the consultant totally dismissed RA and said he thought it was OA but would arrange some further blood test. One of these tests was the anti - CCP. A follow-up apt was made for 3 months.

After 3 months i returned and by this time everything was aching, my elbows, shoulders, ankles and feet. I had done quite a lot of research and was pretty sure i had RA but just needed someone to listen. Surprising he said that my anti - CCP blood test had come back strongly +ve at 330 and i had a raised PV and CRP, my ESR was 58. He said that he was 95% sure i had RA and wanted to start me on treatment straight away. I was pleased but also quite frightened by it all.

I am still not great a year on but i am hopefull i will respond to my current treatment of MTX and Sulph.

Its nice to tell my story to peope who are interested.

Thanks for listening.

Tracyx

mistywillow

munglebungle wrote:

Hi Gill

My journey has been long and painful, i was first aware of stiffness in the morning and night sweats in Nov 07, I put this down to my age. Then in January 2008 i had awful pain in both wrists and arms, also my hands were really stiff - this kept me awake at night and had to regulary get up in the night and take Ibuprofen just so i could sleep. After a few weeks i went to see my GP who diagnosed RSI and signed me off work for 2 weeks, she also arranged some blood tests. Suprisingly the RF test was positive but borderline. My symptoms werent improving so i was referred to a Rheumatologist.

My appointment came through for March 08 - at this appointment the consultant totally dismissed RA and said he thought it was OA but would arrange some further blood test. One of these tests was the anti - CCP. A follow-up apt was made for 3 months.

After 3 months i returned and by this time everything was aching, my elbows, shoulders, ankles and feet. I had done quite a lot of research and was pretty sure i had RA but just needed someone to listen. Surprising he said that my anti - CCP blood test had come back strongly +ve at 330 and i had a raised PV and CRP, my ESR was 58. He said that he was 95% sure i had RA and wanted to start me on treatment straight away. I was pleased but also quite frightened by it all.

I am still not great a year on but i am hopefull i will respond to my current treatment of MTX and Sulph.

Its nice to tell my story to peope who are interested.

Thanks for listening.

Tracyx

Hi all
It seems it is a bit of a lottery as to how savvy you doctors are.
Scottish lass hope your anti TNF works well for you when you start it.

Noeltone must be hard to have had arthur as a companion from a young age, i really feel for all of you who have had so much of your life blighted with having to cope with it.

Eck it must have been a rotten shock to be told your old problems were back with a vengence!

Chris
Ive already said you have too many diseases, please could you stop collecting them now!!

Page
I know you are going through that awful adjustment period but you will learn to cope and have good times despite our common friend!

Mungle
Lets keep fingers crossed that your meds really kick in and make you feel better.

Its such a varied route isn't it but we all have the same challanges to face on a day to day basis and it is good that we can support each other on the way.
Keep posting you guys, its interesting hearing your stories.
Keep well Gillx :P

mike77

hi,

Ifirst started getting pain at the hip at 16 years old but just thought it was growing pains i t would come and go through my growing up, or for some reson it left for a couple of years then came back in 2003 , and then it raised the game on 2007 as I t decedied to appear for good this time, my wife found me on the ground after much protesting from me a gp was called , he sent me to hospital for x rays which they took eight , the counsalant called me into a wee rom were he said sorry but you have Osterarthritis, I thought oh big word for pulled muscle , h said your gp will fill you in
. and he did , now it is all over my body but all I get told is ach your too younng to have this ( I hate that word) but this board sure no how too cheer me and my wife ( hazel ) and mike JR up

Mike R & Hazel & Mike JR

averyniceman

munglebungle wrote:

Hi Gill

My journey has been long and painful, i was first aware of stiffness in the morning and night sweats in Nov 07, I put this down to my age. Then in January 2008 i had awful pain in both wrists and arms, also my hands were really stiff - this kept me awake at night and had to regulary get up in the night and take Ibuprofen just so i could sleep. After a few weeks i went to see my GP who diagnosed RSI and signed me off work for 2 weeks, she also arranged some blood tests. Suprisingly the RF test was positive but borderline. My symptoms werent improving so i was referred to a Rheumatologist.

My appointment came through for March 08 - at this appointment the consultant totally dismissed RA and said he thought it was OA but would arrange some further blood test. One of these tests was the anti - CCP. A follow-up apt was made for 3 months.

After 3 months i returned and by this time everything was aching, my elbows, shoulders, ankles and feet. I had done quite a lot of research and was pretty sure i had RA but just needed someone to listen. Surprising he said that my anti - CCP blood test had come back strongly +ve at 330 and i had a raised PV and CRP, my ESR was 58. He said that he was 95% sure i had RA and wanted to start me on treatment straight away. I was pleased but also quite frightened by it all.

I am still not great a year on but i am hopefull i will respond to my current treatment of MTX and Sulph.

Its nice to tell my story to peope who are interested.

Thanks for listening.

Tracyx

Interesting -- but it has made me really angry -- if I understand it correctly.

It sounds like they sat on the high CCP score for practically three months before they started treatment.

Why didn't they call you, get you in and on MTX straight away? They know that CCP+ve means aggressive RA and that most of the damage is done in the early stages.

If it were me I'd be furious to the point of complaining.

katekelly

Hi Misty,
I was ill for a year before I was diagnosed. I was treated for the usual- a virus, then depression, then another virus, then anxiety etc etc. I was back and forth to my Doctor every week and it was only when I saw another Doctor in the practice (mine was off ill!!!) that I got anywhere. It turned out the other Doctor was the Rheumatologists side kick and he picked it up straight away. I saw the Rheumy in a couple of weeks and was admitted to hospital within 4 days-would have been the next day but my ex was working abroad and couldn't get home. It was a long time ago now (nearly 14 years) and I don't remember much about blood results etc but I do remember being told my ESR had dropped to 120!! Didn't mean anything then now it makes me go cold. Just shows that ignorance is bliss!!

mash65

hi,my story started in march 08.i was working quite a physical & stressful job,i was driving alot too.i had various pains for a few yrs mainly my right knee & right hand.put it all done to job until my neck completely siezed up,i had pain in both knees,right hand & wrist swollen,neck,shoulder & back pain.signed me off work.
i saw my gp he sent me for cervical xrays & blood tests.all came back normal.i then had spasms in my neck & back,given diazapam,cocodomol 8/500 & ibuprofen.at this stage id had 6wks of physio consisting of massage,exercise & tens machine.he then put me on amptripyline as i wasnt sleeping & referred me to rhymy.
i saw rhymy in aug 08,he examined me & dx was secondary o/a plus cervical & lumber spond & costo.rhymy prescribed butrans patches which i was on til jan 09.my gp has took me off as even with antisick tabs i was nausated,vomiting & lost over 2stone in weight & suffered migrianes.i had to give up work in sept 08 as advised by gp.
i now take coco 30/500,ibuprofen,zomorph & oramorph + 40mg amptripyline & ive only had 1 migriane so far.im due at rhymy later this month for the continuing saga.good luck to you all,ive enjoyed reading your stories.debsx

jimmy77

mistywillow wrote:

Hi all
when reading posts i have noticed many of us have pain+ but not always accompanied by swelling or positive blood tests. So i am interested in how your Dr reached the diagnosis and how long they took before you were given meds.
Mine rumbled on for years, loads of pain, but apart from swollen fingers and 1 knee, nothing very remarkable. RF was raised but not very high. My rhemy treated me because he just felt pretty certain it was.(Plus the fact that 1 time I ended up in floods of tears on the phone begging him to give me something for the pain )
He used hydroxychloroquine to start with and pred. The former didnt do anything and now i have been on Mxt for a few years with pred, and pregabalin and tramadol( last few are for my back problems) Worked in the beginning but not so good now.
Interested in your journey though
Gillx :P

Hi,
They took about 5 years and 5 plus doctors. I think they were hoping it was not RA. It's not really the diagnosis we were hoping for. Obviously it's now a significant life-long challenge.

jimmy77

elaine5000

I was diagnosed with Palindromic Rheumatism 6 months after first symptoms in 2001. 4 years later dx was changed to Inflamm Arthritis (poss RA negative). Started Hydroxychloroquine 18 months ago and doing OK at the moment. Just the occasional mild flare but more persistant right wrist pain.
Elaine x

donaldinasheep

munglebungle wrote:

Hi Gill

My journey has been long and painful, i was first aware of stiffness in the morning and night sweats in Nov 07, I put this down to my age. Then in January 2008 i had awful pain in both wrists and arms, also my hands were really stiff - this kept me awake at night and had to regulary get up in the night and take Ibuprofen just so i could sleep. After a few weeks i went to see my GP who diagnosed RSI and signed me off work for 2 weeks, she also arranged some blood tests. Suprisingly the RF test was positive but borderline. My symptoms werent improving so i was referred to a Rheumatologist.

My appointment came through for March 08 - at this appointment the consultant totally dismissed RA and said he thought it was OA but would arrange some further blood test. One of these tests was the anti - CCP. A follow-up apt was made for 3 months.

After 3 months i returned and by this time everything was aching, my elbows, shoulders, ankles and feet. I had done quite a lot of research and was pretty sure i had RA but just needed someone to listen. Surprising he said that my anti - CCP blood test had come back strongly +ve at 330 and i had a raised PV and CRP, my ESR was 58. He said that he was 95% sure i had RA and wanted to start me on treatment straight away. I was pleased but also quite frightened by it all.

I am still not great a year on but i am hopefull i will respond to my current treatment of MTX and Sulph.

Its nice to tell my story to peope who are interested.

Thanks for listening.

Tracyx

Hi Tracy,

I was really interested in your story. I have had pain and swelling of unknown cause in my left knee for almost 2 years. GP and physio said soft tissue damage/bursitis/tendonitis. Blood test/X-ray showed up nothing unusual at the time and I was assured that rheumatoid arthritis affects the small joints first (though my mother's ankle was first affected when she was diagnosed). I was given physio and a steroid injection which really did not do a lot. Anyway, kind of eased up on its own a bit after some months but still niggles and flares up. Recently I have had awful night sweats so was interested to hear you had these aswell... I only recently found out that this could be a symptom of rheumatoid arthritis. Many generations of one side of my family have had RA so I do think that it is quite possible that I may now have it. I have another appointment next week to see if GP will review things. It does help to hear about other people's experiences and makes things seem not quite as scary so thanks very much for sharing your story.

munglebungle

donaldinasheep wrote:

munglebungle wrote:

Hi Gill

My journey has been long and painful, i was first aware of stiffness in the morning and night sweats in Nov 07, I put this down to my age. Then in January 2008 i had awful pain in both wrists and arms, also my hands were really stiff - this kept me awake at night and had to regulary get up in the night and take Ibuprofen just so i could sleep. After a few weeks i went to see my GP who diagnosed RSI and signed me off work for 2 weeks, she also arranged some blood tests. Suprisingly the RF test was positive but borderline. My symptoms werent improving so i was referred to a Rheumatologist.

My appointment came through for March 08 - at this appointment the consultant totally dismissed RA and said he thought it was OA but would arrange some further blood test. One of these tests was the anti - CCP. A follow-up apt was made for 3 months.

After 3 months i returned and by this time everything was aching, my elbows, shoulders, ankles and feet. I had done quite a lot of research and was pretty sure i had RA but just needed someone to listen. Surprising he said that my anti - CCP blood test had come back strongly +ve at 330 and i had a raised PV and CRP, my ESR was 58. He said that he was 95% sure i had RA and wanted to start me on treatment straight away. I was pleased but also quite frightened by it all.

I am still not great a year on but i am hopefull i will respond to my current treatment of MTX and Sulph.

Its nice to tell my story to peope who are interested.

Thanks for listening.

Tracyx

Hi Tracy,

I was really interested in your story. I have had pain and swelling of unknown cause in my left knee for almost 2 years. GP and physio said soft tissue damage/bursitis/tendonitis. Blood test/X-ray showed up nothing unusual at the time and I was assured that rheumatoid arthritis affects the small joints first (though my mother's ankle was first affected when she was diagnosed). I was given physio and a steroid injection which really did not do a lot. Anyway, kind of eased up on its own a bit after some months but still niggles and flares up. Recently I have had awful night sweats so was interested to hear you had these aswell... I only recently found out that this could be a symptom of rheumatoid arthritis. Many generations of one side of my family have had RA so I do think that it is quite possible that I may now have it. I have another appointment next week to see if GP will review things. It does help to hear about other people's experiences and makes things seem not quite as scary so thanks very much for sharing your story.

Hi

Have you mentioned to your GP that there is a family history of RA, i know there can be a link but not always. Also have you had a blood test for RF, this arent always positive but its a good starting point. I would ask if i was you.

My pain started in my wrists then my fingers became stiff, i think these 'specialists' need to think outside the box a bit more often and not label everyone with the same.

MY night sweats have settled down now but at the time i remember being drenched in the night and stiffness in the morning was also a problem.

Good luck with your next appointment, make sure you mention the night sweats as these ought to be investigated further anyway.

Take care

Tracy