Need advice on what to do about referral

Bones, joints and muscles
1

Hello all. I'm new to posting on forums, but I can see how knowledgeable and experienced you all are, so here goes. I hope someone can help with advice about a referral.

I've suffered chronic and sometimes highly acute back pain since my 20s (I'm a 48 year old female). I've been "ill" for the last five years, with life changing consequences - previously a runner, hillwalker and horse rider (all of which helped maintain my back health). I've had to change my lifestyle considerably due to joint pain, frequent back problems and terrible fatigue (which even beats that fatigue we get in pregnancy). Last year I was twice at a specialist NHS eye hospital with Scleritis and very recently have started having bouts of unexplained diarrhea. At the moment I have pain in my left buttock/pelivs. You can see where I'm going with this........ wink

Anyway - from 2009 to 2013 I went 'round the houses' in NHS (Scotland). I've seen consultants in medicine, rhumatology and neurology. I've had every test under the sun, all of which come back negative. Last year, after the rhumatologist mused over AS then confirmed I don't have it, I decided to get out of the system and try to get on with my life, stop thinking about it and accept the limitations. Very frustrating.

However, the buttock pain and new bowel problems are making me wonder if I could face the fight and get back into the system again. It's hard, because I feel like the medical professionals see a middle aged woman and assume I'm neurotic. I try really hard to persuade them I'm not - I'm a professional, a mother, an ex-sports woman, with no interest in being ill, but because I have nebulous symptoms I don't feel like I'm taken seriously.

What do you think? Should I step up to the fight and get in there again? If so, who should I ask to see, or what sort of specialist? Not had much success with general rhumatologists. Could I ask to go to Bath from Scotland? Or does anyone know if I can ask to see someone in another health board in Scotland? Or, should I just wait and see for another couple of years, if something happens that might allow a diagnosis?

Your advice on how to negotiate the health system would be very much appreciated.

2

 HI Meg , sorry about your health problems. Not being a doctor, wouldnt even begin to give you advice on your symptoms only to suggest you do not give up seeking help. It is interesting to note they thought of AS at one point - I know it took a few years for them to properly diagnose mine (and others I understand!) after first believing it to be rheumatoid and then psoriatic arthritis. Interesting too, that it seems my live, in terms of activity, has closely followed yours - I too have been into horse riding since I was a child ; as well hiking, cross country skiing and cycling. Although I had to make some adjustments, I have refused, after over 40 years having AS, to give any of these activities up and I am sure they are what have kept me going! I really believe the worst thing you can do is to do nothing out of fear of pain or worsening your condition, but again, I am no doctor!! I know this wont help you much but hope it makes it bit easier for you to make decisions. I have lived in the uk for twelve years after moving here from Canada so not as up to scratch on the NHS rules as I am sure others here, are. Good luck!

3

Hi Meg

Did the docs do an HLA B27 blood test?

I have AS - since age 18 - I am now 48. 

I have been self treating with a modified diet and supplements since age 26 - after getting treated at a private clinic -  The Burwood Clinic in Surrey.  

I have had a few ups and downs but basically went from sore buttock pain, hips so sore that I was limping, chest pain, lumpy sore back, in my sternum and ribs.  My dad has AS so I was aware of the symptoms.  Both wheat / corn and cows milk gave me a dodgy gut.

In short there is plenty of evidence that gut bacteria and diet are linked to arthritis - with dietary studies even in the Lancet.  Gluten has been shown to open the gut lining - in all individuals which allow the immune system to be exposed to bacteria that would otherwise stay in the gut.  If your interested then take a look at a few other sites - kickas.org springs to mind.

Sorry - I can't give any advice on the NHS as I have been down a different route - but with your stated gut symptoms I strongly recommend that this is looked at first as they  could be linked.

 

4

Hi and welcome to the site. I think that the one common fact that most people suffering from AS is how long it took to get diagnosed.  Did they test for the gene?  You sound so like the usual symptoms of AS is had to believe that you don't have it.  I live over the pond here in Canada so sadly I can't tell you anything  about the healthcare system but I would highly recommend that you go back. Enough time has gone by that they should see the damage that has been done to the spine. Please keep us posted on things go for you. Good luck 

5

Interesting. I also am 46 and my son is 22  he has had it since he was 7. I have chosen to stay on the bio meds and my son has decided not to. His disease has definitely progressed much faster. But I'm in a flare in right now that has me in bed most days which as we all is the worst thing that an AS sufferer can do.  The problem is that I absolutely LOVE starch !  Any ideas what else I can do?

6

The diagnosis of (AS) is currently made by combining clinical criteria of inflammatory back pain and enthesitis or arthritis with radiologic findings. See http://emedicine.medscape.com/article/332945-differential  I was diagnosed with AS from multiple x-rays. Have you had an MRI or X-Rays to determine AS?  Whilst an HLA B27 blood test can be an indicator, mine was negative. If you haven't had an MRI, ask your doctor/specialist to order a test.

I'm hearing horror stories about people in the UK not getting diagnosed--fortunately I'm in California (an ex-pat).

7

Tom, thanks for this. The recent worsening of symtpoms has really messed with my ability to ride my lovely pony - since I've had to stop walking and running, being able to pootle about with the dogs and pony has kept me going.  I've spent the last 48 hours flat on my back. So I fear losing my ability to ride - but look at you!  40 years with this terrible condition and you're still doing these things.  Thanks for the inspiration.

8

They didn't do that test, I don't think.  SO, all your lovely responses have given me courage to get on with it and try to get to the bottom of it.  I'm going to make an appointment.  Actually, after getting nowhere last year and being so ill, I did read about diet.  Believe me I'm a big cynic about alternative therapy - however, with nothing left to lose, I gave up wheat and dairy last June.  It did make a big difference to the amount of energy I had - in fact I was able to start working more hours and do normal things with the kids.  I would never go back.  Debbi, it's painful for the few weeks, but you'd be amazed how much better it makes you feel.  Of course, I don't have confirmed AS, so am not the right comparison, but it certainly can't do any harm, as long as you pay attention to keeping a balanced diet.  Why not give wheat a miss for three weeks and see how it feels.  It'll be tough for the first two, then after three you probably won't want to go back! Then you can think about the other things after that, if its working for you.  

9

Debbi, thank you.  I suspectI have it too and I'm beginning to realise that people have some terrible stories of diagnosis taking a very long time indeed.  And during that time, irreversible damage is being done. It seems wrong.  I'm about to make an appointment to see the doctor and start things off again and I'll ask whether I've been tested for that gene.  Thank you so much for the support - its much appreciated.

10

no problem Meg! Just sorry to hear you are in so much pain - can be very frustrating especially so since you have no diagnoses yet. I agree with the others that you should look into getting the gene check (although i understand it is not always 100% accurate) and also the MRI as has been suggested. If it does turn out to be A.S. take heart that there are many newer meds that can help immensly. I was diagnosed with arthritis (which was years later confirmed as A.S.) when I was 17 and took over twenty aspirins a day in the early years then went through the whole range of anti- inflammatories until settling on time - released indometicin for quite a few years which kept me going fairly well although still needed knee ops and several knee aspiraions a year! That was in Canada - I know here in the UK they dont like using indometicin much and never did have the time release version. Anyway, for the past five years i have been taken the biological med "enbrel" and it has done wonders for my mobility and pain control. it is not without its possible side affects and detractors but it has sure changed my life for the better! Only problem is, the deterioration had set in long before enbrel arrived! As far as diet goes, I have read a lot about the no -starch/wheat diet and had purchased a booklet from a man in the states who swears by it but just didnt have the self dicipline to keep on it! I have met an old gentleman here in the UK with AS and his wife put him on the strict diet a few years ago and claims to be symptom free since!! Anyway, just to let you know there ARE ways to help ease symptoms of this disease ! The important thing right now is to keep after the doctors for a definitive diagnosis! Sorry - i notice my spell check isnt working!

11

You are so right, Debbi about staying immobile being  the worst thing you can do! Sometimes it seems its the ONLY thing to do but have found it only makes things much worse! And sadly, I too love starch and all things carbs way to much to give up - wish I had more willpower! Sorry to hear the bio meds arent helping at the moment. I have been on enbrel for four years plus now and still working quite well. Have you tried more than one of them?

12

thanks for the the info loaded - the more we can learn, the better! I currently live in the UK but from Canada where it took years to properly diagnose A.S. so looks like its a problem there a well as in the UK! I must say, though that I am so impressed with the NHS here - brilliant doctors and no fuss about getting on enbrel - even delivered to my door every two weeks! amazing!

13

Loaded - thank you so much for this.  It's really useful - I'm going to print it out and take it to the doctor with me.  It makes the tests I need crystal clear and will either diagnose or rule out AS.  Thanks.

Tom - I agree.  The NHS has its frustrations but my goodness where would we be without it?  I have a child with Type 1 diabetes - don't know how we'd manage without the wonderful NHS.  Thanks again all.

14

Hi Meg.

I am in exactly the same boat as you.  Im 30 years old and have had serious back, hip and pelvis pain for nearly 7 years.  I have been to numerous specialists and GPs over this time.  I seen a Rhuematologist back in 2011 who actually laughed at me when I asked her thoughts on AS as at that time my main symptom was ongoing pain, morning stiffness (to the point my boyfriend had to help me out of bed), sleeping for a few hours then being wakened by the pain, struggling to get up if I was on the floor and struggling with daily actvites. I had kept a journal for 3 months so she could see what i was dealing with and she refused to read it. I left in tears. she wrote to my GP and said she thought I had Fibromyalgia and that was that. my Gp never relayed this to me and after changing docs cos I was getting nowhere I discovered last year that this diagnosis had been made.

over these years my symptoms have increased somewhat.  I still have all the above but the pain is now unbearbale.  I now have debilating left hip pain, my buttocks are screaming in agony, I have poor movement in my lumbar spine and hips to the point Im lucky if I can move have a cm in any direction.  I am in a Flare at the moment (whether Fibro or something else) and have actually managed to notice new patterns.  I now have psoriasis when pain in high, major fatigue, and also have a high fever.  These were present the last 2 times I had a flare.  

I am now not sure whether to return to my GP as I just know in my gut there is something else wrong and AS is high on my possiblites.  I am just fed up of not being taken seriously.  I have a 5 year old daughter who I struggle to play with or enjoy to be honest.  Do you think I should also go back and fight?

Hope your successful in you battle and really hope they listen to you this time.

xx

15

Well, Hazel, we do seem to have similar experiences.  I think we should both get back in there, having heard what all the people above have to say.I've printed off the diagnostic criteria that 'Loaded' recommended and I'm going to take them with me to the GP.  I've also looked up the NICE guidelines, as suggested in another post on here with someone else in a similar position to us.  These set the 'rules' for the NHS for referral and dispensing drugs etc.  I've cut and pasted below the guidelines for GPs that suspect a patient has AS.  I'm also going to print these off and take them to the GP and request these tests are done.  I know I'll be referred back to Rheumatology and my experience there so far has not been good.  However, I plan to sit with the diagnostic criteria and ask them to explain to me how I do or do not meet them.  Seems to me, it all relies on radiographic or MRI evidence of sacroiliitis.  If they don't find that, then I won't be diagnosed.  If I'm not, then perhaps the thing to do is to go back every year and ask the tests to be repeated each year, presuming the symptoms carry on as they have done the last few years.  It would, of course, be a great thing NOT to have this condition!!

I've got an appointment with a private physio tomorrow to ask her if she thinks this pain may come from my sacroiliac joint.  If so, then I think that gives me a starter for a conversation with the GP.  I'll be taking my print outs to the GP consultation.  I'll let you know how it goes.

The NICE guidelines say it typically takes 5-7 years to get a diagnosis.  I suspect that's because it takes that long for the condition to do enough damage to be seen on medical imaging.  Meanwhile, sufferers seem to be treated like neurotic hypochondriacs, at least by some.

Anyhoo.....heres the bits I've pasted from the NICE guidelines.  Good luck Hazel!

.....

"How do I make a working diagnosis of ankylosing spondylitis?

Diagnosis is typically delayed by 5–7 years which has implications for disease progression. Making the diagnosis early is difficult because the onset of ankylosing spondylitis is insidious, with symptoms developing over several years, and there is no definitive diagnostic test. Early diagnosis therefore requires a high index of suspicion.

Suspect ankylosing spondylitis in anyone with chronic or recurrent low back pain, fatigue and stiffness, especially if:

- They are a teenager, or adult aged less than 45 years.

- The back pain has been present for more than 3 months.

- Stiffness is inflammatory (rather than mechanical) and worse in the morning.

- They have current or previous:

   -Buttock pain, sometimes on one side and sometimes on the other — distinguish from sciatica which usually radiates down one leg and is associated with neurological symptoms and signs.

   - Arthritis predominately asymmetric and in the lower limbs.

   -Enthesitis, costochondritis or epicondylitis.

   - Anterior uveitis (iritis) — this presents as an acutely painful red eye with severe photophobia; if untreated, it can lead to loss of vision.

    - Psoriasis or inflammatory bowel disease, or recent infective diarrhoea or sexually transmitted disease (especially Chlamydia).

     - Symptoms wake them in the night.

   - Symptoms respond to a course of nonsteroidal anti-inflammatory drugs (NSAIDs) within 48 hours.

Around three-quarters of people with ankylosing spondylitis have a good response to NSAIDs within 48 hours of treatment. In contrast, only around 15% of people with mechanical back pain will respond well.

  - There is a family history of ankylosing spondylitis or spondyloarthropathy.

  - Other conditions with similar presentations have been excluded, see Differential diagnosis.

Refer to a rheumatologist for confirmation of the diagnosis as this can be difficult. 

16

Hi Hazel

My Dad has had Psoraisis at times with his AS - I am of the view that there is an overlap in Psoriatic Arthritis and AS.  PSA is liked to streptococcus infection and AS is linked to sub-clinical Klebsiella reaction.

As a start point for your pain - cutting out all carbs, dairy (cow) and sugar for a few days to see if this helps. It helps me a lot and I have seen many others online.   I suffered hugely from age 18 to 26 - the worst of my AS has been dampened with my diet changes.

If you look up autoimmune protocol there is lots online on this - including advice from one of the top immunologists in the country Professor Jonathan Brostoff.

17

Hi Tom. I have also tried humaira but sadly it turned out I was allergic to it. The syptoms were a lot of hair lose (which thankfully grow back once I stopped taking it) the most difficult one was chest pains that was sooo bad I thought I was having a heart attack. I've started walking again which always seems to help. It's just difficult to get oneself motivated to work past the pain but it's always rewarding once I do. This is such a great place to come and talk to people for support and information. It's difficult for spouses to understand cause it seems like overnight the person they loved and married has changed. I feel very sorry fort husband as he has to deal with not only his wife having this terrible disease but also his only son (and only child). Thanks for all the support that I've received from people on this site.

18

When I told my Doc I thought I had AS as my brother had been a sufferer for years he told me it was not AS and treated me for stress. For 5 months he gave me various drugs that made me feel I was living in a goldfish bowl. Eventually he said he would get me X-rayed " for my own peace of mind".A week later he called me to say he was afraid I did have AS.

Over the years I have taken various medications, mostly with awful side effects. Latest was Morphine. Did not like what it was doing to my life so tried dl-Phenylalanine on the recomedation of a friend.Been feeling pretty good for a month or so now. Maybe I am just going through a good spell with my AS but I will keep taking the dl-P as it does not seem to have any side effects.