Hi everyone, would like to ask a question. I suffer with RA (23 yrs) also cervical dystonia. I have a lot of problems and pain in my neck, I receive Botox for my dystonia but my dystonia nurse says it is made worse by the RA attacking my neck, when I asked the RA nurse she said " you can't get RA in your neck" this really confused me. Is this true??
R/A in neck???: Hi everyone, would like to ask a... - NRAS
No.....it's commonly said, but I and many others know to the contrary
My neck is affected by RA. My rheumie said same thing, but without Humira my neck pain is not manageable with Humira it's fully manageable. There is still so much to learn about RA - doctors included the
The nurse is wrong - which is odd as if a specialist nurse then she should know. Yes RA most commonly affects the small joints in hands and feet. However the C1 and C2 vertebrae, the top two in your neck called atlas and axis, can also be affected by RA. There are a number of people on here who have ended up having to have neck fusions because of cervical spine complications. Luckily this is now increasingly rare as the disease is generally better managed. But it exists... here is a paragraph from a medical journal (the alantoaxial joint is the one between your top two vertebrae)
"Another notable population that is disproportionately affected by atlantoaxial dislocation is chronic rheumatoid arthritis patients, particularly adults. The atlantoaxial joint is frequently affected in rheumatoid arthritis with studies showing incidence rates ranging from 23 to 86% of patients with rheumatoid arthritis. Although it is not well documented, it is likely the rate has declined in conjunction with advancements in medical treatment of rheumatoid arthritis (i.e., biologics and immunoregulatory medications). The cervical spine often becomes involved early in the course of rheumatoid arthritis, leading to three different patterns of instability: atlantoaxial dislocation, atlantoaxial impaction, and subaxial subluxation."
I am currently being investigated for this. I also have wear and tear damage in the rest of my neck, which my rheumatologist is not interested in at all. But she does care about the top joints!
So perhaps the nurse was thinking that the pain you describe is just wear and tear lower down your neck (very common in everyone) which is why she said no.
Thank you for your replies, I was really confused because years ago when I was with another hospital they were treating me for RA in my neck, but this new hospital said you can't get RA in neck. I have been asking for an MRI but because they don't feel it's RA I can't get any further does anyone have any suggestions. TIA. X
Next time you see them say you are worried about cervical spine instability (alantoaxial subluxation) and see what they say.....
As the other posters have stated I know from first hand experience that you can get RA in your neck. I have been suffering with it for 10 years + and my Rheumy at first said catagorically that you can’t get it in your neck. The pain comes from swelling of the odontoid peg and is the joint at the top of your spine/base of your neck which gives you pivot movement. I have been in hospital on a few occasions where the swelling is that bad my head won’t even move a cm without pain so do not let them fob you off! I really do wonder with some of these health professionals where there lack of knowledge can help them be in a caring profession. Hope you are ok, the pain in unbearable in any joint but I can totally empathise with you.
Hello, just to say the c spine can definitely be affected by RA as the above posts confirm. I've had RA for 46 years and my neck was damaged by the disease after 10 yrs. Had 3 c spine fusions to stabilise and decompress nerves on spine and general anesthesia now not possible. I find it very surprising medical professionals are saying this. Lower spine generally not RA but cervical spine definitely. Better drugs controlling RA now may make this more rare. MRI will help diagnose, good luck.
Oh yes you can! I've had my neck decompressed and fixed C3-C6 because of RA. C3 subluxed onto C4 (starcase effect), chaffed my spinal cord and caused loads of symptoms, but mild at first. Neurosurgeon told me I could have been paralysed or died!
Thank you everyone for your replies, I really appreciate it, I am going to speak to my GP, as I can't get anywhere with hospital, dystonia nurse says it's RA and Rheumatology say it's dystonia and this frightens me as no-one will take responsibility and I could be the one who really suffers. Thank you again. Xx
a load of rubish to say that.I have had a lot of bother with my kneck and can hadly turn it.At one point they were going to operate but i was told one of the side affects could be a stroke it frightened the life out of me and i did not go ahead with it as i wanted to make things better not worse so i just live with the pain so how they can say this.
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