Date: 30.01.2016
From: Kath
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Subject: Frustrated 😬
hi I'm new here, just need to explain my frustration, sorry everyone. Well here we go about two years ago I had terrible pain in my elbows and the doc said tennis elbow, gave me steroid injection and I carried on as normal, then about 8 months after that my shoulder were terrible couldn't carry shopping or lift my arms above my head, went to doc again and they X rayed, results rotator cuff injury on both, then my elbows started again another steroid injection, August 2015 my thumbs and small fingers on both hands became painfull no swelling but thumbs twisting and groves in my nails, went back to my doc had X-rays and all the blood test, blood tests came back as negative for RA but she said X-rays looked like oesteoarthritis, I was shocked but then I said my Grandmother, mother and Aunties suffer from RA 6 female close relatives, she just looked at the computer and gave me some cocodimol. I came out feeling really let down. Started going to a physiotherapist he had concerns saying I really should see a fumatologist .Now I have pain in my heals, ankles, knees small amount in my back plus my hands elbow and shoulders I also feel very tired and achey and can't seem to go by without crying at least once a day. So off I trot back down to my docs and explained my symptoms again and the pain I'm in, sometimes not being able to sleep because of the pain and aches, she's still saying OA.so I ask to see a rheumatologist.
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Date: 30.01.2016
From: lucy
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Subject: Re: Frustrated 😬
Hi Kath, I'm sorry to hear that you are feeling so bad and it must be very frustrating for you. You are doing the right thing asking to be referred to a rheumatologist, I feel your doctor should have referred you before now especially when you have so many in the family with RA. Is it the middle joints in your fingers that are affected? these are the joints that RA affects whereas it's the joints at the top of the fingers that are usually affected by OA, as far as I know. I hope you get some answers soon and put onto the right medication if it is RA. Let us know how you get on. x
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Date: 31.01.2016
From: Kath
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Subject: Re: Frustrated 😬
hi Lucy thanks for reply, no it's the main knuckles from my hand to my fingers, the very end of my fingers go numb and white sometimes, both my little fingers pop all he time, I'm a care assistant and I love my job, so scared I may have to change career, I'm 53 this year always been very fit walk everywhere because I don't drive also had to stop doing my yoga as I don't feel well enough. Just want the correct diagnosis so I can start to deal with this. X
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Date: 31.01.2016
From: lucy
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Subject: Re: Frustrated 😬
Hi Kath, You are right, you are entitled to get the right diagnosis and doctors don't always know the difference. It does sound as though there is something more than OA going on and if it is RA then you need the right medication. The drugs now have much improved but it's important that you get seen soon to prevent any further joint damage. Is there another doctor that you could see? if not I would insist she makes the appointment Urgently as it isn't right that you haven't seen a rheumatologist before now. Good luck xx
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Date: 31.01.2016
From: lucy
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Subject: Re: Frustrated 😬
I meant to say, Kath, there are over 200 different types of arthritis. Even with RA there is sero-negative which is usually milder and sero-positive RA. If you have sero-negative then it doesn't always show up in the blood. You could always phone the hospital and tell them how bad you feel if the doctor doesn't and try and get the appointment pushed forward. xx
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Date: 01.02.2016
From: Paula -R
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Subject: Re: Frustrated 😬
Thought this article might be of interest. The link wont work, but if you copy and paste it into your address bar you should beable to read it. http://www.dailymail.co.uk/health/article-3115960/Agony-arthritis-tests-t-spot-Thousands-told-ve-just-overdone-garden-miss-vital-treatment.html It states that you can have RA even if nothing shows up in your bloods. Lots of doctors don't know this. Good Luck and I hope you get to know whats what soon. xx
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Date: 04.03.2016
From: Debbie
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Subject: Re: Frustrated 😬
Hello Kath, I was diagnosed with sero-negative erosive arthritis in 2014. My blood tests have always been normal, the diagnosis was based on clinical symptoms and most importantly doppler ultra sound which showed significant activity and erosions on two fingers which I could quite easily have chopped off! :-). Other small joints including my toes were also affected. I was treated initially with various DMARD, IV and oral steroids with minimal success. I now take Certolizumab pegol (Cimzia) subcut fortnightly, methotrexate 25mgs subcut weekly and 12.5 prednisolone daily and am relatively well controlled, although my wrists are not good ATM.
My GP and consultant have been fantastic, I am so fortunate to feel so well supported! It is a fact that seronegative RA can be more of a challenge to control.
I would suggest you either ask, or find out yourself if there is a rheumatologist locally who can diagnose using Doppler ultrasound. (http://www.arthritisresearchuk.org/health-professionals-and-students/reports/topical-reviews/topical-reviews-summer-2011.aspx)
I wish you well, Dxx
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