Hi all, I'm new to this forum - joined as I believe I have some kind of joint disorder/spinal arthritis. My question is, should an ESR count of 34 be acted upon (eg referral to Rheumatology), if consistent with other ongoing joint/neck/spine stiffness and pain?
X-ray in 2015 showed mild Spondylitic changes in the lumbar spine, but was told results were normal (!?)
*Had an episode of posterior uveitis in 2002. Also have joint hyper mobility.
Thanks
Take a look at NASS.co.uk - they have the standard for referrals to rheumatology for AxSpa. If you have the symptoms take a copy of the NASS guidelines to your GP. An hla b27 positive blood test will help for referral but not a problem if it's negative and you have enough of the other symptoms. The uveitis episode is definitely worth mentioning as it's recognised that there's a higher prevalence of it in AxSpa patients. My inflammatory markers were always normal hence a 25 year battle to get referred and diagnosed. Turns out it's not unusual to have low inflammatory markers. If AxSpa is suspected you must have an MRI. The hypermobility can make it difficult to diagnose AxSpa. I'm hyper mobile in my hips, elbows and knees. Rheumy was adamant there was nothing wrong with me because I'm very bendy - MRI soon showed there was!
Hi Jnmmum, thanks for the info! Will definitely have a look at the NASS website. I was looking into the HLA B27 test - did you have this done privately or by the NHS?
That's a long time to have had to wait for a diagnosis, sorry you had to go through that. Hope you're getting the treatment you need. It's frustrating when you have persistent symptoms, but because basic tests are in the normal range, it's assumed everything is fine and therefore you're not referred for further, more detailed tests/scans.
Where I am, GPs can't directly refer patients for an MRI for musculoskeletal problems - I think a Rheumatologist would have to request it. I'm definitely going to ask for a referral, as GP referred me for a spinal and pelvic x-ray, but hospital rejected the spinal one due to government guidelines on electromagnetic radiation (even though he mentioned in the referral that previous spinal x-ray was abnormal)
Hi,
Yes - on my patient notes online the first thing it says is "somatoform autonomic dysfunction"... Someone made up their mind very early on that it was all in my head and I think that explains why I didn't get very far with GPs for so many years...
A GP ordered the hla-b27 test after I was marched into the surgery by my husband as I was looking so unwell all my friends and family were getting worried. The first thing he said was fibro and the look on my face must have been a picture (I'd been told I had ME for years and when my husband asked what fibro was I snapped "ME of the joints pretty much") so the GP then asked if I had back problems. My lower back hurt if I stood for more than 5 minutes and I was very stiff in the morning, but as it all went away with movement I'd never mentioned it to a GP. I didn't know these were classic AS symptoms - I'd never even heard of AS.
When the hla-b27 came back positive, my husband accompanied me again to the GP (a different one as never see the same person twice at our surgery it seems) as he couldn't believe how I'd been fobbed off the last time. This GP still didn't want to refer me, but husband has no problems with getting bolshy when needed and demanded I be referred. Even the rheumatologist after first examing me wrote to the GP to say that she was at a loss as to what was wrong but would order an MRI "for completeness".
When I went back to see her turned out the MRI was "very impressive" - and that wasn't good. She showed me lots of very alien looking things on a screen that were apparently my pelvis and kept saying - "we shouldn't be seeing this". The disease was very active and she said all the fatigue and flu-like symptoms all those years will have been the AS and not ME at all. I was put on biologics as soon as possible.
No one else in my family has AS, so seems just me who got lucky.
I was 42 when I was diagnosed and I think it is ridiculous that a woman in her 40s has to take her husband to a GP appointment to get the care she needs! After 25 years of being told there was nothing the matter I had lost all faith in doctors and never went to see them unless I was forced to. So keep asking for that referaal - if you meet the criteria for referral according to the NASS chart, the GP has to refer you. Good luck!
Thanks! I'm going to remind my GP of the referral next time I speak to them, which should be next week after the pelvic x-ray.
How awful that it was assumed your symptoms were all in your head - it really gets me when people, especially medical professionals try to insinuate that. I remember when my symptoms started/became noticable in my mid 20s and blood tests kept coming back as normal, one GP said to me 'you've had all the tests and it's all psychological'! I'm sure Somatoform is mentioned somewhere on my records too.
I feel like we, as patients, put our trust in medical professionals and look to them to give us the correct advice and diagnoses - that's what I used to think, anyway. But with experience, unfortunately that's not always the case. I will say there have been some great GPs who have actually listened (the last doctor I saw was really helpful and I felt he was actually listening to my concerns), but as you say, you don't always have the continuity of seeing the same GP more than once.
I can't believe after seeing how ill you were, plus the HLA-B27 test being positive, the GP you saw was still reluctant to refer you - it's good that your husband was with you to put things right - I know it can be really hard to push for things/stand up for yourself if you're feeling really fatigued and unwell. Always helpful to have someone by your side in these situations.
Like you, my symptoms are worse with rest and seem to improve during exercise - I've always found that strange, until I read about conditions such as AS. I hope you continue to get the treatment and care that you need - we can never give up when it comes to our health!
Our GP told my dad when I was 19 that there was nothing wrong with me, so I got pretty short shrift from him for years, thinking I was malingering! Prior to symptoms starting I was working weekends all day and school in the week, plus going out 4 nights a week. Suddenly I was unable to cycle the 3 miles to school, slept 14 hours a day and never went out. What 18 year old is like that?! Beggars belief really that my GP didn't believe what I was saying!
Exactly! You can't suddenly go from very active to unable to do usual activities without a good, valid reason. I really wish a lot of GPs/medical professionals would actually take into account when you tell them that your symptoms are making you put your life on hold - it's as if they think you're exaggerating.
Prior to the uveitis episode, I was doing quite a bit too - working two jobs, doing a course, going out at weekends, but had to slow down due to the symptoms/fatigue and side effects from the Prednisolone. Since then, I haven't been able to do as much as I did back then!
It’s worth pushing for a referral. It is unusual for RA to affect the lumbar spine region (my consultant is adamant that it just doesn’t affect it at all) so that may be unrelated. Good luck!
Do you have psoriasis or family history of psoriasis?
Hi, no family history of Psoriasis/never had Psoriasis myself. Would that be related to Psoriatic arthritis?
What you described sounds a lot like psoriatic arthritis but without a family history of the disease I highly doubt it but maybe you should ask your older family members like grandmothers, grandfathers, Aunts, Uncles if anyone in your immediate family has been diagnosed with psoriasis…. Psoriasis can sometimes be a very mild issue that comes and goes and sometimes it can skip generations…. Worth the effort to ask might be surprised.
What are the ranges on your ESR labs?
ESR results from most recent blood test were 34 mm/hr [normal range 0 - 23] - the highest it's ever been! That's a good point, I will see if other relatives have/have had Psoriasis. No grandparents around, but other family members. My mother had very mild excema localised to her wrist, otherwise no other skin issues
Its possible your moms eczema really isn’t eczema its not uncommon for doctors and some dermatologist to mistaken psoriasis for eczema and as I mentioned earlier not every person who has psoriasis has it bad and some people go years without having a breakout….
Did your doctors test C-Reactive levels along with the ESR? If so what were those results? ESR and C-Reactive are normally tested together.
What diseases are associated with uveitis?
Uveitis can be associated with many diseases including:
AIDS
Ankylosing spondylitis
Behcet’s syndrome
CMV retinitis
Herpes zoster infection
Histoplasmosis
Kawasaki disease
Multiple sclerosis
Psoriasis
Reactive arthritis
Rheumatoid arthritis
Sarcoidosis
Syphilis
Toxoplasmosis
Tuberculosis
Ulcerative colitis
Vogt Koyanagi Harada’s disease
pubmed.ncbi.nlm.nih.gov/230...
Could be that is was Psoriasis - could be difficult to distinguish between the two. I myself don't have any excema type skin problems - although a few months ago, had a very small patch on my hand, but think that was from overuse of hand sanitiser!
At the time I had the uveitis, it was thought I had Vogt Koyanagi Harada disease, but I'm not so sure, as I didn't have any of the other features - only uveitis. Also when I was in early teens, I had a leision on the brain, which caused nocturnal epilepsy - no seizures now, though. So it seems the inflammatory process has sort of been there most of my life.
GP didn't request CRP, only ESR - CRP was borderline a few years ago, though. Another thing I will have to ask when I contact them again.
Hi again, even if you don’t have psoriasis but if someone in your immediate family does your chances of developing psoriatic arthritis goes up by 30%.
I have active psoriatic arthritis and my rheumatologist always does ESR and C-Reactive together … Maybe its time to see a Rheumatologist.
INFLAMMATORY OSTEOARTHRITIS What is this diagnosis? Where can I find information about this?
Osteo after an injury?
Could nettles be a ray of hope for osteoarthritis/arthritis sufferers? 
Arthritis examinations
