Hi, I finally managed to get an appointment with a Rheumatologist, after being referred by a GP, who tells me he 'likes a challenge!' I didn't expect miracles as I didn't want to be disappointed and, what can I say, other than, he didn't disappoint!!! I purposely didn't mention AS and he didn't either. I am one of these undiagnosed, women don't get AS, people! I have been on the NSD for just over a year, and although definately not pain free, I have seen some improvement, so it has now just become a way of life. Although diagnosis, isn't necessarily important for me, I can't help but feel disappointed. I think positively, I do reformer bed pilates 2-3 times a week and have decided that I will carry on my way despite what the professionals say (rightly or wrongly).

What saddens me the most is this weekend I have managed to get hold of an aunty who I have not been in contact with for the last 10 years when my mum died. My family history of arthritis and back problems is immense but AS has never been a diagnosis for anybody. My aunty always had back problems, at times wheelchair bound after, yet another, operation. She has had spinal fusing, has had bone spurs removed, has rods in her back due to disc crumbling, has curvature of the spine and last but not least, now has problems with her neck and shoulders. The reason I had phoned her was to get some information on the family history before my appointment but unfortunately didn't manage to get hold of her until a couple of days after my appointment. I asked her if Ankylosing Spondylitis had ever been mentioned to her, to which she answers, 'yes, that was on my notes years ago!!'

She had no idea what AS was, although she clearly has all the damage from it!! I feel so angry that she could have maybe, just maybe prevented some of the damage that she now has. Within the last two years she has been told she has Golfer's elbow (not 100% sure what this is) but has been prescribed Naproxen because of it. Now she says that it is a god send to her and can't go to bed without one Naproxen and a pain killer for the pain in her back. It wasn't even prescribed for her back!!!! She said she was told that she may eventually fuse all the way up to her neck.

I hope I am not boring you all but I would like to share my family history,

Mum - back issues for years. Was in traction for 8 weeks at the age of 28. Since died of Motor Neurone disease.

Mum's sister - all the above.

Mum's other sister - arthritis in both arms which are now in braces. Also arthritis of the spine. (Kidney problems for years, not sure any relevance).

Mum's mum - wheelchair bound in later life due to arthritis of the spine.

When my next Rheumatologist appointment comes round, I am going to mention my aunty's loose diagnosis. I should feel happy that maybe someone will start looking at my problems and maybe start making some connections but instead I just feel sad that my aunty has spent the last 47 years being operated on again and again and has never been properly diagnosed.

Your story is all too common, especially in the UK. I'm in a pretty similar position myself.

Definitely mention your aunty's diagnosis - if she said it was in her notes, then talk about it to the rheumatologist as a definite diagnosis. Might help a lot to get yours taken seriously. Make up a kind of family tree chart that identifies who has arthritis, and who has other conditions.

I too get really angry when I see folk that have been left without any real treatment like that. A good friend's mother is in exactly the same position - has been left with really bad osteoporosis from years of high dose steroids and is badly deformed and in incredible pain - and in spite of having a spondyloarthritis diagnosis for quite some time has never been offered any treatment for it other than steroids and pain relief from the GP. I'm not even sure she has ever seen a rheumatologist - at least not for the last 10 years. At least one of her daughters has bad back pain, and has given up trying to talk to GP about it (same GP as her mother) as she keeps getting it dismissed. She is young enough for treatment to really help avoid her mum's problems, but I doubt if she will get any until its far too late.

Keep pushing for both diagnosis and treatment. Even if it doesn't change the way you deal with your problems much, at least it may help the younger generation of your family if you do get a firm diagnosis. I keep thinking that the only way my nephew is going to be taken seriously is if someone else gets diagnosed so he has a "family history" to quote at doctors.

I hope you do get answers.

Its so frustrating isn't it and also incredibly sad. I feel like printing out everyone's posts and forcing my Rheumatologist and GP's to read them all. Surely then they would realise that they were wrong about women not getting AS.

I have a close friend, who's brother as been recently diagnosed of AS. I knew he was having problems and suggested that it could possibly be AS as his symptoms seemed to fit. Because he has private health care through his work, he has managed to get to see a good specialist in Hitchin in Hertfordshire. His Rheumatologist is fantastic and supports the diet and has managed to get him exactly what he needs drug wise. He has told me what drugs have been like a wonder drug to him and says I should push for them aswell (I have no chance!!). He has the same local GP as me (one which dismissed me because women don't get AS) and she is prescribing him these expensive wonder drugs!

You are right though, I do owe it to the future generations of my family to persevere. My 2 nieces have been getting pains in their joints, hopefully not connected to AS! Reading your story has made me doubly sad!!!

There are days when I do my pilates and I am in so much pain, my body just refuses to move and there are days I feel like skipping in there but I have never missed one class. I know that if I don't keep moving I could end up with even more damage. Likewise with the NSD, I would love to be able to eat exactly what I want. I guess what I'm trying to say is that if I don't help myself then noone else will. This is NOT going to take over my body without a fight!!!

I agree with what cemc has said.
Mention your aunts diagnosis and family history.
My greatgrandfather had same issues with spine as did my grandfather who recently passed away. My father is hanging on a work by a thin thread. He is in so much pain and has fusion in his SI's and multiple back, knee issues yet the doctors will not test him for HLA.

I am HLA-B27 positive and have been diagnosed with AS so I don't get why they won't test my father. My 15yr old daughter has recently been diagnosed with JAS and is on methotrexate, she is HLA positive as well as RF positive. My 13 yr old boy has just been refered to a rheumy but he is HLA- but positive for ANA.

Your story however sad is all too familiar here. It took me over 15 years to get a diagnosis but luckily my GP worked it out and he is helping with my kids.

All the very best and please let us know how your next app goes.

Hello and welcome to KA. I`m very sorry to hear that your doctors feel women don`t get AS. I wish they could talk to the women here about that!!

Here is an article from Boots WebMD that talks about AS: Ankylosing Spondyltiis. You`ll note that it specifically states that men are three times more likely to get AS, which jibes with current thinking in international rheumatological circles.

And here`s an article on the NHS website that they might be even more likely to listen to, in which it says the same thing. NHS Article

Arthritis Research UK says this: AS article

And finally, Dr. Raj Sengupta`s page at the Bath Clinic. It is one of the top clinics in the UK that I know of, and he is their AS specialist. Dr. Sengupta`s page

I`ve included links to UK sites, since you`re in the UK.

It irks me that in 2012, a woman is being handed this absolute tripe. Conventional wisdom is now that women do, indeed, get AS. Not only that, but some experts believe that the pain of AS can actually be worse in women than in men, although we do not tend to get the more disastrous spinal kyphosis that some men get. You might also tell your doctors to check out the revised AS diagnostic criteria, as determined in the last year or two by an international symposium of actual experts in the field. Here is their website: ASAS Group.

Honestly, now my dander is up. It`s been a really long time since a woman came in here with this story. GRRR!

Hugs,

Thank you to everyone for your words of advise.

Inanna - thank you so much for taking the time to post those links for me.

Thank god for the internet and sites such as Kickas. Everyone's support really does help.

X

Just a quick addition to the replies - "golfers elbow" will probably be a tendonitis or enthesitis. In AS, enthesitis is a major feature of the disease - in laymans terms, enthesitis is just tendonitis a bit closer to where the muscle or tendon joins the bone. Most common enthesitis points in AS tend to be the feet - achilles tendonitis is really common, but it can happen in any area, and some of us have quite widespread enthesitis. Its inflammation, so yes, naproxyn (if you can tolerate it) is exactly the right first-line treatment for it,and, as your aunt has discovered, NSAID's like naproxyn can work quite well in a whole lot of different places with this disease where inflammation is happening. In fact, one of the diagnostic criteria for "inflammatory back pain" (compared to mechanical back pain), is that you get relief within 24-48 of starting regular NSAIDs, and the pain returns with 24-48 hours of stopping it.