[Evei]

I have been struggling with a undiagnosed condition and after 9 years I seem now to be actually getting the referrals needed to get to the bottom of it which I feel has only come about really as the physio and optician have highlighted conditions and evidence that has basically forced the GP into making referrals as they have not listened to me.

I'm not very 'pushy' and find going to the GP hard work, by the time I go I normally have coped with a lot and have reached desperation point. I never get to see the same doctor, appointments are 2 weeks plus if I don't want to miss work. I feel completely stupid when I am talked to (bar one doctor) and they give conflicting advice on medication so I'm made to feel that I have made the mistake or I am lying when I clearly know what I have been told. I just get so frustrated! I'm not sure if it is my that my GP is bad or they are on some sort of reward scheme for not making referals I also get the impression that they feel that I am wasting their time I have gone to them a maximum of 8 times over the 8 years and that includes going for test results as they only will give results over the phone between 9-11am and I work at those times

There is one great Dr at the practice who I feel comfortable with but she is impossible to get appointments with I'm guessing because she is so proffesional and lovely at the same time.

Is this normal? Have I just got a bad GP practice? As soon as I have got my diagnosis from the referals (even if it is a negative one) I think I will be moving doctors (I would move now but feel it would cause problems with records) I just feel like a nervous wreck going there, but neither do I want to end up somewhere worse!

[LRLipscombe]

I can so relate to this. I used to have a GP's surgery where you would never see the same doctor twice. I ended up seeing over 10 GP's and 2 consultants before I received my ME diagnosis and it took 18 months!! I have now changed my surgery and I have to say that my new GP is much better and will refer you on to the hospital straight away and always sends out letters to remind you about check ups and medication reviews etc. I would change your GP if you can.

I can relate to being made to feel stupid though or like it is all in your head. A good GP should listen to you and understand that you know your body better than anyone and if you say something isn't right it isn't.

I hope you get the answers you need.

[Evei]

Originally Posted by LRLipscombe

I can relate to being made to feel stupid though or like it is all in your head. A good GP should listen to you and understand that you know your body better than anyone and if you say something isn't right it isn't.

I hope you get the answers you need.

I'm not the only one then

Until this year i had put off going and telling them again as 3 years ago one Dr tried to insinuate the pain was all in my head and it was depression. I somehow managed to be polite, disagree and walk out just to burst into tears of frustration and anger when I got home, I was no further on than I was before the appointment, instead I had just been ignored and insulted.

Oh well, hopefully in 2 months from now I will have a diagnosis one way or the other and be allowed treatment so I can continue to enjoy work and life. All the pieces of evidence are fitting together as the symptoms are becoming more noticeable the older I get (I'm 33) X-rays are now showing damage to joints since I had the first ones done 8 years ago with loss of movement, uveitis and psoriasis have been diagnosed so it's looking like something that is attacking connective tissue. Shame the damage has to be visible first before they will investigate!

I would love to help campaign for better awareness of autoimmune diseases, seems to be something that affects a lot of people and the symptoms are often ignored in younger people.

[LRLipscombe]

No you're not the only one hun. I agree that auto immune diseases and conditions need to be looked at more. I also had the 'it's all in your head' and 'do you think you are depressed' from doctors. I knew I wasn't though so I just kept pushing and being a nuisance. It is ridiculous though that we have to do that. I also used to come out of the surgery in tears and I ended up doing my own research and telling them what I thought I had.

Glad you are getting some answers now though!!

[kath196]

I have been attending the gp for years, and I mean years for the same thing and getting the brush off. It was only when I went in and caused a stir that I got some joy. I had got to the point where I could stand upright for no more than a few minutes. It had taken them more than 20 years for me to get referred to a rheumatologist who diagnosed me on the first visit. It sounds like a similar thing with the eyes and joints, autoimmune. Good luck , hope you get sorted out and get the treatment that you need.

[Evei]

Originally Posted by kath196

I have been attending the gp for years, and I mean years for the same thing and getting the brush off. It was only when I went in and caused a stir that I got some joy. I had got to the point where I could stand upright for no more than a few minutes. It had taken them more than 20 years for me to get referred to a rheumatologist who diagnosed me on the first visit. It sounds like a similar thing with the eyes and joints, autoimmune. Good luck , hope you get sorted out and get the treatment that you need.

Hi Kath I think you saw one of my posts last year when I last tried to get the GP to do something. It does seem very similar, I now have a weird sticky out bum stand now and my arms hang forwards as my top half leans forward, by bottom of my back is 'frozen' Luckily I am super bendy so can hide it pretty well most of the time.

It has been the eye problem (uveitis) that has at last triggered the move at last to Rheummy as the inflammation is attacking my eye now which can affect sight. A bit annoying as if I was on medication this might never have developed. I was reading that it takes on average 8 1/2 year for someone to get diagnosed with AS. I wonder if it is as long for all the autoimmune diseases that do not show up on common blood tests?

[medusa]

I think that autoimmune conditions are amongst the hardest to diagnose though, if only because the symptoms can be so vague. Almost every symptom that someone comes to see a doctor with can be put down to an autoimmune condition if you look at them a bit skewed, but that wouldn't help the 90+% of people who DON'T have an autoimmune condition when they come to see the GP, and it would be hugely expensive and wasteful too.

I'm from an SLE family and I read somewhere that the average time from onset of symptoms to diagnosis is something ridiculous like 9 years, purely because SLE is not a common condition and the vast majority of people who go to see their GP with a painful shoulder will have a trapped nerve in their neck, or a pulled muscle, or arthritis, or a torn rotator cuff, or something else, but maybe 1 in 100 will have an autoimmune disorder and will have a selection of vague and apparently unconnected symptoms of which this painful shoulder will form part.

I'm not trying to defend your GPs on this- just leaving you in pain with no help is ridiculous and I'd probably have already written to the practice manager a few years ago and asked for the reasons in writing why the ongoing symptoms were not being investigated further (which is one way to shake them into action BTW) or have stood my ground and asked for a second opinion from a rheumatologist.

How long should they go on treating (or attempting to treat and failing to find an answer for) symptomatically before they realise that there's something bigger happening? I would hope that it's rather less than 8 years.

[kath196]

I did actually change gp's for a couple of years due to changing the area where I lived, but I am now back at the original one. The one that I changed to was much the same, never saw the same gp, always a different one, weeks to wait for appointments. I think most surgerys are ran in the same way now and I think we have lost something from the days when it used to be a family doctor and always the same person that you saw and you just sat and waited to see them.

[Evei]

Originally Posted by kath196

I think most surgerys are ran in the same way now and I think we have lost something from the days when it used to be a family doctor and always the same person that you saw and you just sat and waited to see them.

I think it may be good practice for practices to allow someone with long term illness or ongoing undiagnosed condition to have the same doctor through that period of time/ treatment. I do think as a patient you feel more confident if you can see the same person and not have to explain everything each time.

[Evei]

Well eventually got an official diagnosis of ankylosing spondylitis.

To be honest it is just a relief now as I thought I was cracking up this year and I was somehow imagining the pain and fatigue after it had been really painful for 6 months none stop over winter and spring. Think it has giving it's self a rest at the moment as feeling pretty good so making the most of it

Strange how getting a diagnosis (after 10+ years) can actually make you feel relief. Annoys me a little that I was in so much pain and the GP has been so stubborn about pain relief. At least they might believe me now when I am having a bad spell and give me something to help. Having to take time off work for two weeks last year really upset me but I just could not cope.

[muckymurphy]

What makes a good gp?

One who does not insist on giving you an appointment that means you are better again or dead by the time it comes round.

My surgery could fit in 3000 extra consultations per year if they got rid of the appointments system that they use to thin out their workload.

Instead they just ostracise patients who miss their appointments - even those who go to hospitals and walk in surgeries for treatment.

It's not our fault.

[steve68]

Originally Posted by Evei

I was reading that it takes on average 8 1/2 year for someone to get diagnosed with AS. I wonder if it is as long for all the autoimmune diseases that do not show up on common blood tests?

My first point of contact with a G.P 2001 for hip and back pain, then an osteopath recommended in 2002 that I get checked for AS she wrote to my G.P who said tests were not needed and that the Osteo was an idiot Dec 2011 I had a referral to rheumatology which confirmed AS through x-rays MRI and bloods its been a long 11yrs.

Many different treatments and departments some tests over the years, but never the right ones until I raised the AS point my osteopath had made to a new G.P in 2011, who then made a few enquiries and then referred me to the rheumatology dept.

I moved to Sheffield this March and my records and reports hadn't shown up after more than 3 months at my new G.P so had to arrange to have copies of my rheumatology reports sent directly to me, so changing a G.P can mess up treatment and diagnosis. If I'd stayed in London I would Have started Anti-TNF treatment in April, as it is I've had to start all over again , currently having hydro and physio and seeing sheffield rheumatology next week.

[steve68]

on a side note AS suffers NASS has a lot of info.

[Evei]

Originally Posted by steve68

on a side note AS suffers NASS has a lot of info.

Thanks for the website, I will have a good look around , from what I have heard men suffer more from AS (worse symptoms and higher % get it) Fingers crossed for the anti-TNF drugs coming through quickly for you. My boyf has them for RA and they have been life changing for him, a absolutely massive improvement, it made him notice how ill he had been feeling once he started to feel better.

I do feel there needs to be better awareness of AS. It is quite a different pain to an 'injury' due to the variation in the pain and the fatigue, so I don't understand why the symptoms are so much harder to distinguish and it seems mad that physical evidence of bone damage has to be there before most people get passed on to the correct consultant. I also ended up in orthopedics in 2004, but the damage was not clear then so nothing got picked up on the x-rays. Good Luck with your Rheummy appointment, they all seem to be very nice there

[Saffy]

I have a wonderful GP, who was there for me when I was withdrawing from Oxycodone ... At the end of the phone, all I did was to call and she would ring me back to reassure me.

She's got me a wheelchair. She's insisted ATOS come and see me and not the other way around.

Her support and care have been above and beyond and I don't know what I'd do without her.

[Evei]

Originally Posted by Saffy

I have a wonderful GP, who was there for me when I was withdrawing from Oxycodone ... At the end of the phone, all I did was to call and she would ring me back to reassure me.

She's got me a wheelchair. She's insisted ATOS come and see me and not the other way around.

Her support and care have been above and beyond and I don't know what I'd do without her.

That is great support Saffy I'm thinking of writing a nice letter for the two GP's that I have found to be helpful. I do have a lot of respect for Dr's, and I don't want to rubbish GP's, they have tough jobs and appointment times are so rushed. I deal with the public in my job so know it is not easy when you are governed by government rules, regulations and targets. There are so many different conditions to diagnose and I bet there are a fair few patients that time waste. Sounds like your GP is fab. The other thing is that my condition is not a bad one as I am still very active.

I have to admit I am not very good at explaining myself, I spend most of my time ignoring it and getting on with things, so that has been a big problem with me being honest enough with the GP's. I only go when I have reached the end of my tether, which is normally when I have not slept properly for months during a big flare up and the pain overwhelms me.

I feel like I'm moaning if I go, I'm not ill, it is not life threatening, I just hurt, it sounds pathetic. Admitting I hurt (and the randomness of it) is embarrassing. I think at work they must think I have a daily miracle I walk in like an old women in the morning in a grump, by lunchtime I'm running around, then go off cheerfully to play netball in the evening!

[steve68]

Hi Evie,

I can relate to what you have written, So far I've found all the Sheffield health care professional I've encountered have been pretty decent to deal with, like you I was sent to orthopedics, straight away from the first visit the consultant was fixated with surgery, something I managed to resist surgery although I adid have a few faucet joint injections which helped.

Eventually I ended up being kicked from Orthopedics to the persistent pain clinic...eventually due to a change of G.P ended up at the rheumatology dept straight away the consultant said AS just from a physical exam.

Who wrote a strongly worded report to my GP which questioned why I hadn't been referred early, my GP apologized and felt guilty for making the same mistakes all my previous GP's had made.

Which was silly as she is a brilliant GP in terms of listening and going out of her way to help, and without her help I'd still be undiagnosed.

I'm taking part in the Copers study just being around people that can relate and understand was a relief, its easy to start self doubting when you've been plagued by something like undiagnosed AS once all the pieces come together it really is a relief to know there is a physical explanation.

its a shame the AS group in Sheffield folded i'd have liked to get involved.

Thumbs up for your B/F for getting such a good result from the Anti-TNFs

[Evei]

Originally Posted by steve68

Eventually I ended up being kicked from Orthopedics to the persistent pain clinic...eventually due to a change of G.P ended up at the Rheumatology dept straight away the consultant said AS just from a physical exam.

Sounds like we have had similar pathways. I was referred to 'physio first' I met a lovely lady physio that explained that as well as physio she could ask people to refer me to the pain clinic and whatever happened I would not be left without ways to cope. However once she asked some questions and examined me I think she knew right away what was wrong, she had to go and speak to someone higher and they requested a Rheummy referral via my GP. However in the meantime I developed uveitis and the Ophthalmologist also flagged up AS too.

As I don't appear to ever show high inflammation in blood tests, which I think has been what has thrown the GP.

It is a shame the AS unit died in Sheffield, I know of one person via a work mate who attends the Rotherham group, they are trying to get younger people to go.

[steve68]

Originally Posted by Evei

It is a shame the AS unit died in Sheffield, I know of one person via a work mate who attends the Rotherham group, they are trying to get younger people to go.

It is a shame, my physio has suggested, I go along to the Rotherham group, but its just a bit too far for me to travel too, so I'm thinking once I've finished the hospitals hydro sessions, I might try the disabled pool exercise sessions at Zest Upperthorpe which would be much easier for me to get to.

[Evei]

Originally Posted by steve68

It is a shame, my physio has suggested, I go along to the Rotherham group, but its just a bit too far for me to travel too, so I'm thinking once I've finished the hospitals hydro sessions, I might try the disabled pool exercise sessions at Zest Upperthorpe which would be much easier for me to get to.

I think that would be a good idea I wonder if there is much interest in an AS group in Sheffield? I will have a look into it.

My Nanna has undifferentiated spondyloarthritis so guessing it runs in the family. I never knew she has it as she always called it her 'rheumatism' which I guess was the old term that age group used when they were not sure what it was. I always presumed she had wear and tear arthritis, but after speaking to Dad I found out that she used to spend months in bed when he was a little boy and my grandad did a lot of the looking after, 40+ years ago bed rest was the recommended action for a bad back!

She was well into her 50's when they gave her a diagnosis and she still suffers, she has some symptoms of lupus, psoriasis and AS. She has joints that burn and are visibly red and swollen and gets odd bright red rashes on her face, psoriasis of her fingernails and some AS symptoms. Like me she shows no increase in inflammation markers in her blood.

The last 15 years she has had a lot of 'bowel' trouble, again this has been linked to autoimmune issues. Luckily there appears to be only a little structural damage shown on x-rays compared to many others. Seems to be a strain that causes the pain and symptoms but not the lasting damage to the same extent as others. I know this is an issue seen in RA, people appear to have the same amount of pain, but for some people the damage done is much higher, rapid and disabilitiating when compared to others with the same symptoms.

It would be interesting to understand why this occurs as it could open doors to stop the disease damaging the body even if they cannot stop the inflammation.