Uncertain if I have RA, advice needed!
lucyzhao
Member Posts: 3
About 6 months ago I started to get pains in my toes and fingers and part of my back and neck. Then it progressed over the next few months to whole spine, arms, shoulders and knees. One day it would be toes, the next it might be shoulder and neck or chest. Now most joints are effected and rib cage (is this a joint?) I have had a lot of blood tests, MRI scan, X-rays of hands and feet but still Drs are uncertain what I have. I've seen a rheumatologist twice (first time paid to see him privately to speed up then same Dr on NHS). First time he gave a tentative diagnosis of Palindromic RA and gave me steroids to try. I took the steroids for two weeks but they had no effect in giving pain relief. I also had an anti-CCP test which was negative at 0.4. Therefore, on my second visit, the rheumatologist said he was "moving away" from a diagnosis of RA primarily due to ineffective steroid and negative anti-CCP. (although Rheumatoid factor has been tested positive a while back)
I've also seen a neurologist and neurosurgeon but results of MRI scan are inconclusive, there does not seem to be enough disk damage to explain my pain. Anyway, with sciatica is ought to be down one leg but my pain is everywhere and varies day to day.
So I'd like to ask, from your experience is negative anti-CCP and ineffectiveness of steroids enough to rule out RA? When you first got steroids, did you get instant relief? Any idea what my problem might be?
I've also seen a neurologist and neurosurgeon but results of MRI scan are inconclusive, there does not seem to be enough disk damage to explain my pain. Anyway, with sciatica is ought to be down one leg but my pain is everywhere and varies day to day.
So I'd like to ask, from your experience is negative anti-CCP and ineffectiveness of steroids enough to rule out RA? When you first got steroids, did you get instant relief? Any idea what my problem might be?
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Comments
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hi lucyzhao
was told by my consultant that RA dont effect our backs or hips but there is several other arthritis it could be , having positive RF dont mean someone has RA , sometimes it takes them a long time to give you a diagnosis , took them two years to tell me had RA even though my GP told me it was after the first blood test
hope they sort some drugs for you soon & help you with your joints0 -
Has your Rheumatologist considered Fibromyalgia? I only ask it has widespread pain, jumps around the body, can raise your swelling markers but ISN'T degenerative!! I'm going to find & post you a link that is a possibility for your chest area.
Obviously I'm not a DR I'm just trying to suggest other possibilities.
Wot ever is wrong I really hope you get a diagnosis asap, not knowing is often as stressful, if not more so, than the actual diagnosis
Take care & I'll try & find you that link.Healing Hugs
Debbie.x0 -
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http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm
I hope the links can at least rule these conditions out for you Lucyzhao.xHealing Hugs
Debbie.x0 -
Hi Debbie,
Thanks very much for your advice regarding Fibromyalgia. I will look into this as a possibility and get back to you.
Do you think the lack of response to steroid and negative anti-CCP tends to rule out RA or could it still be early stage of RA?0
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