Arthritis Forum
Home.

News.

Personal Stories. Links. Message Board.  
Arthritis Forum  
Add your comments to this topic Start a new topic
Date: 04.12.2012
From: Levi

Subject: Can't get a diagnosis.....

Hi there,

I have been a follower for a while and this is my first post - so thanks for having me!

I have returned from my Rheumatology referral today rather despondent as the Rheumy has said that he does not believe I have arthritis and has diagnosed me with depression - in a way I should be delighted with this diagnosis but really believe I have RA.....

My story;

I woke 3 yrs ago in a sodden mess as though I had wet myself and generally stiff and a pain across the very bottom of my spine - could not sit up and had to roll out of my bed......this was my routine every morning for the next few months until severe pain in my hip took over as the overarching pain.

Several trips to the GP led me to a referral to a tropical disease expert (had a trip to Kenya the previous year) which showed nothing other than I should be a veritable paragon of health from all the tests - and he suspected I had ankylosing spondylitis or RA, and kindly gave me an MRI scan and a referral to rheumatology......

After a 5min consultation with the first Rheumy they said the MRI was normal with a bit of calcification and that they were discharging me back to the GP who would refer me back if there was no improvement in my health.....

So another year passes where the GP tries every concoction of pain killers (diclofenac, naproxen, tramadol, morphine, amitriptyline and lastly gabapentin) and with no improvement and pain in my right wist and index finger joints - she decides that as my eldest brother is diagnosed with seronegative RA, fibromyalgia and scoliosis that it is very likely that I have RA based on my symptoms (morning stiffness which lasts for several hours, joint pain in lower back/pelvic girdle, severe pain in right hip, wrist and index finger) so got referred back to rheumatology.

6 months later I finally get my appointment today with the hope that I can get on with a diagnosis - only to have a 5 minute consultation with the Rheumy, who refers only to blood tests and the MRI carried out almost a year before and tells me that in his opinion that I have depression and all my pain is a manifestation of the depression "sort of like your brothers fibromyalgia" and that I am being discharged with some antidepressants.....

So I should be glad right? Afterall I don't have the debilitating disease and I should be fine in a few months!

I however do not believe I have depression - yes I am low some days when I get a flare up in pain and want to cut my right hand off at the wrist - but that's only because the pain is so much it is bound to get you down??!!

So I have to ask you all if it was a struggle to get a RA diagnosis for yourselves or am I just thinking I have RA (albeit seronegative like my brother) when I have depression - I.e seeing something is not there?

Should I just be happy that the quack "does not think" I have RA and get on with life?

My only issues now are that I am still in a world of pain ( and I have cut off a finger in the past or dislocated a shoulder and thumb which did not hurt as much!) and am generally a happy go get them person!

And a second opinion appears to be out of the question as I saw the top rheumatologist in South Wales......

Anyway I have got it off my chest and I only hope you are all battling on!

All the best,

Levi
reply | back to forum

Date: 04.12.2012
From: Colin

Subject: Re: Can't get a diagnosis.....

hi Levi , welcome to the forum

not sure whats going on , one thing is it dont sound like RA which has got to be good , there is few reason for this , main things to look out for is swelling, heat & redness in joints & RA been told dont attack our backs & hips although several of us get those problems

hope they find out soon whats going on
reply | back to forum

Date: 04.12.2012
From: marlene

Subject: Re: Can't get a diagnosis.....

Hi Levi, don't give up I have OA and had back pain and buttock and leg pain for years before being diagnosed with a slipped disc and bone spurs on lower lumbar, I am not suggestions for one minute that this is what you have. Pain can be reffered pain from a totally different area. I have since had surgery for my back, I listened to a surgeon say you don't have hip trouble I don't know whats wrong with you. To a rhumy guy telling me we all have aches and pains, was he telling me it was all in my head?? Then my GP referred me to someone else in a different department that said I will write down here what I think go and have an MRI scan then see me in two weeks and I will show you what I have written. L2 L3 slipped disc along with OA absolutely correct. So just keep knocking on those doors until you get a correct diagnoses.
I wish you luck take care and so glad you joined the forum.
reply | back to forum

Date: 05.12.2012
From: bsk

Subject: Re: Can't get a diagnosis.....

Hi Levi, some of the delay in diagnosing RA is due to people being sero negative or just not getting referred to a rheumy by their GP. It took six months for me to get diagnosed, initially with sero -ve inflammatory arthritis as my rheumy rather hoped it was a temporary thing. This changed to RA somewhere along the way.

I agree with Colin that your symptoms don't sound like RA to me and blood tests will inevitably show some inflammation markers though not necessarily for RA. I would seek another opinion in your position, there are plenty of good rheumy's around the country. Manchester doing some good research I hear.
reply | back to forum

Date: 05.12.2012
From: Colin

Subject: Re: Can't get a diagnosis.....

hi Levi

agree with bsk , blood test should tell if there is any inflammation going on , the normal ones we have check monthly are CRP & ESR , they your gp done blood test , then pretty sure they would have done these as well as check for Rheumatiod Factor

there is about 200 different forms of arthritis , the reaction of the doctor saying its depression is a joke , they tend to say it because they dont know whats wrong with you .
reply | back to forum

Date: 05.12.2012
From: Levi

Subject: Re: Can't get a diagnosis.....

Thanks all for you kind words of welcome and advice.

Well I went to my GP to see if I could be signed back into work and she has asked me to remain from work for at least another 4 weeks whilst the new drug regime of gabapentin, tramadol and duloxetine take effect so that she can monitor how I am with the drugs etc....

She just laughed off the diagnosis of depression as farsical and is trying to see if a colleague she knows who specialises in fibromyalgia will do a private consultation as she believes that I either have fibromyalgia or seronegative RA.

She believes I really need a second opinion and unfortunately it would take between 9 and 12 months via the normal route and given i have seen the top doctor in our region that it would be better and quicker to get a private consultation.

With regard to comments on blood tests, these have not been scheduled regularly and whenever I have had bloods they have been done ironically when I have been feeling better and as a result the results have only shown marginal elevated levels.

As to joint swelling - well I never really have massive swelling when I am in flare only slight puffiness and tenderness but the finger, wrist and hip all feel warmer to the touch - so I don't know if this counts as swelling?

Lets just hope that this private consultation happens soon and I can at least set my mind at rest as to what is causing this pain and get back on with my career.

If whatever is ailing me does not turn out to be RA or FM then I can only give you all my love and sincere sympathy as your pain would be much more than what I suffer and that in itself is debilitating in itself!

Best wishes to you all,

Levi.
reply | back to forum

Date: 05.12.2012
From: bsk

Subject: Re: Can't get a diagnosis.....

Hi Levi,

you are right, it can be very difficult to get accurate blood results if you are feeling better when you have them. Mine were elevated at the beginning of my illness, but not really high like some people's and they've been low since then as I've been on steroids, even when I have really active arthritis.

I shouldn't really have said that it didn't sound like RA as am not a doctor and also one only gets partial information from these posts. I would like to add that depression is sometimes part of the beginning of RA. I certainly had it, also flu like symptoms. I was easy to diagnose in a way because, although sero -ve my joints were visibly swollen (though not red) and I couldn't walk at all. Not all of us are text book though and would trust your GPs thoughts as she knows you. It's really awful to say you have depression when you have a physical illness.

If you go private you should be seen very quickly. Do your research though as to who you would like to see

I HOPE you haven't got either of these illnesses but also know you would like a diagnosis. Best of luck.
reply | back to forum

 

Add your comments to this topic
Subject:
Please type your comment here:

Your name:
email:

4+3=
(This sum is to help prevent automatic spamming through this page - thank-you)


top

Site design: T - Creative Home | News | Personal Stories | Links | Message Board