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New & waiting for consultant diagnosis.

Hi, this all started around 10/11 weeks ago. We were nearing the end of a weeks break in Spain with our best friends. Firstly I had lower back pain which I thought was due to sitting on a sun bed wrongly reading. The next day I had pain in my left knee & struggled to walk on it. The following morning I woke to pain that felt like it was in every joint in my body. It even felt like my bones were hurting. The only way I could describe it was like the flu without the cold, but worse.

When we got back to the UK I went to my GP who initially though I had been bitten(no bite marks) or food poisoning, but had no other symptoms of that. I continued to feel really bad and could not go back to work. I went back to the GP 3 more times, who the decided I should be referred urgently to see a Consultant Rheumatologist. What I didn't know wasin my area you get filtered through a private company working for the NHS. I eventually got to see a GP with special interest in Rheumatology who after examination & questions said that I had inflammatory arthritis & he would need to refer me to a consultant rheumatologist as he couldn't help me. A week and a half later a letter came through asking me then to make an appointment with my local hospital rheumatology depot. Quickest appointment 3.5 weeks away.

The company I work for have been really helpful and understanding. I am on a phased return to work and have set up an office at home.

My dad had rheumatoid arthritis and psoriasis & one of my sisters has sarcoidosis, osteoporosis and is now being looked at for RA.

Sorry for the long post, but wondered how long it took others for proper diagnosis?

40 Replies
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How long is a piece of string? It depends on your GP/Rheumatologist, and what results turn up in your blood tests. It can take months to get an appointment with a consultant, so 3.5 weeks isn't very long really. I know this isn't very helpful.

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Hi poemsgalore1,

Thanks for the reply. It's the total time that is a bit long, from GP to consultant, when there is a window of opportunity to slow down the disease if caught early enough. I appreciate your reply,& I know everyone's story/Gp/Consultant experience will be different.

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I think everyone worries about this delay, and most make plenty of trips to the Gp before referral and then have to wait to be seen by a Consultant. The important thing is that you are on the way to finding out whats going on and beginning treatment to manage it. Wishing you well.

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Thank you Norisa.

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Ages must of been 6 months and 15 months later still trying to find right medication I think I have got it now methotrexate injection s but had to go to doc this morning as sickness bad gave me more pills let’s hope this is it I hope to go back to work next week been absent 6 months good luck we all get their eventually x

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Hi Elswick, sorry to hear you're feeling bad today. Hope the pills help. I've read once you've got a diagnosis getting the meds right can take time. Hopefully you get sorted soon & can return to work. Even though I'm not full time at the moment & working from home it helps to take your mind off things and a little bit of normality. X

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Months , first diagnosed with Vit D deficiency, kept going back to the docs on a monthly basis tellIng them I wasn't right, eventually got more blood tests, my first NHS appointment with a Rheumatologist is Oct 31st ! Luckily I have Bupa through work, but they don't pay for drugs and may not pay for any other follow up appointments. You seem to be lucky, although it may not feel like it, that it's only taken a few weeks to get an appointment through. If I hadn't had Bupa, I couldn't have coped with the pain any longer and seriously don't know what I would have done, the pain got me down so much!

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Hi Rubyroo, I had the option of taking out bupa with work 18 months ago but didn't bother to fill the forms out. (regrets). I even looked at paying privately just for a consultation but that was going to take longer than the NHS. I'm concerned that it may take a lot longer to get the correct diagnosis and start treatment. I'm currently using ibuprofen and Zapain for pain management, which help quite a bit but when they wear off, it can really hurt, mainly wrists, hands & elbows.

Do you have a nearer date for an appointment now & have you got another diagnosis other than the vitamin D deficiency?

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Yes I have been diagnosed with RA now, just been prescribed Sulpha and prednisone, just over 1 week into the meds, still aches and in pain. I find that Deep Freeze gel helps. NHS no nearer date, just hoping I can get Bupa to pay for on going Rheumy visits otherwise I have to wait until end of Oct !

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Hope the meds start to help you soon & bupa sort you out until the NHS appointment. I will have a look at the deep freeze gel thanks.

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Ruby which area are you in? I am shocked by what I am reading here with people having long waiting times. It took me less than a week to see rheumatology and everyone else but I was suffering with chronic pain and also a kidney problem plus a hernia. My poor GP did not know what hit him when I staggered into the surgery but sorted all appointments out ASAP

Hope that you get it all sorted very soon

Take care

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West Sussex - I was shocked too that it was such a long wait !

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I have private medical ins also but have to say the nhs I. Devon were fast. Within ten days I had seven or eight consultants see me. I am not sure how many mri scans and cameras, even a full angiogram, have to go as off for yet another hospital procedure today and it is likely to be four hours. Fingers crossed all will be ok now just pain to sort out next

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Wow. Could your GP be cloned?

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Try not to mention Rheumatoid Arthritis to BUPA,or any other Private Medical Insurance Company. They regard RD/RA as an incurable disease & won't pay for most treatments, certainly don't pay for complicated RA surgeries.

Once you have been diagnosed these insurance companies find all sorts of excuses not t pay up.

If you do see a Consultant on BUPA ....he/she will write to your GP & after. your first Private prescription your NHS GP, will usually write you an NHS prescription.

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Thanks for the advice regarding Bupa. I am just going through the NHS at the moment as I never filled out the forms at work. Going forward I suppose they wouldn't look at giving any help as it would be classed as pre-existing and incurable so not worth joining now anyway.

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Sorry just realised it was meant for Rubyroo, lol. I keep pressing wrong buttons, replying when I shouldn't and deleting stuff. I'll get used to the site soon...

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It's not you.....this site is going through a few problems at the moment......look back over the last couple of weeks...lots of us have had problems!

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Exactly.......once you have been diagnosed it is regarded as a pre existing condition. Some conditions like cancer can be accepted because they are curable, but like every thing to do with RA......it's complicated.

I gave up Private Medical Insurance when I found I was paying more in subscriptions than it would cost me to self pay.

I can still see a Consultant Privately if I need to, (without having to justify to insco why) & once I have paid his bill that's it...no onward escalating subscription to pay every month.

The only downside I have found is you don't only pay your consultant, but the Private hospital charge you as well. It cost £300 when I had a biopsy.....the surgeon only charged £200 to do the procedure...,but still cheaper all round & I got a diagnosis quickly.

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It depends on the terms of the policy.

When I first became ill I went private. This was before the symptoms were obviously an inflammatory arthritis. I had CT scans, x-rays, MRI, lumbar puncture, endoscopies x 2, numerous Consultant appointments with haematologist, gastroenterologist etc etc. Was eventually diagnosed with Reactive Arthritis by a private Rheumatologist.

They continued to fund treatment and appointments privately. The Rheumatologist and my GP worked together so all drugs I needed were prescribed by the GP under guidance from the rheumy. Didn’t cost me or the private health insurance for medication (apart from prescription costs). The only caveat to this is when in private hospital the meds are prescribed privately but this is usually covered.

After approximately 2 years they said that it was a chronic condition and they would no longer fund private treatment of the disease itself, however they will and have still funded treatment for the effect of the condition. I have had 1 hip resurfacing op and one total knee replacement done privately and have subsequently had a multitude of further surgeries and procedures done privately that weren’t directly caused by RA but it certainly played a part in causing the problems.

I don’t keep a running total, but I can guarantee that the cost of all this treatment has been well into 6 figures. Each surgery was north of £10k and I have folders full of invoices from various private hospitals and consultants.

Further to that if you do see a consultant privately (and they do NHS work as well) they are usually fine to transfer you on to their NHS list afterwards. Whether you think it is morally right or not to queue jump, sometimes you have to think of number 1 IMHO. The cost of an initial consultation is around the £200 mark. Small beer to reduce what can be a 6 month + wait I reckon.

The private policies I have had over the years have all been through the company I work for - individual private plans tend to have more restrictions placed in them or cost a fortune. For example ‘medical history disregarded ‘ is reasonably common in workplace schemes, but very expensive in individual schemes.

Hope that clears it up a bit.

🙏🏻

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Hi, PFKAAde

My insurance was originally though my employer in the 1960's....of course no sign of RA then, & I did get a hefty discount when I started paying for it myself. I had the top scale for London Hospitals.,& as I had been a corporate member for 20+'years my membership conditions were the same.When RA was diagnosed in 1999 the inscos were not as strict about RA treatment. But gradually different Consultant's secretaries advised me not to mention RA per se...just say joint problem!

I do agree Private Insurance is a great company benefit....I had a £25k spine operation , which was not available on the NHS. after breaking my neck in a car accent.

But I found in the last vew years, no doubt age related, although I haven't needed any more treatment than 10 years ago the subscription was going up by 10%, then 15%, & on doing my sums I am now thousands better off by self paying if I need to see a consultant quickly.

I am not denigrating Private insurance at all....I was just pointing out the facts as I have experienced them.You might pay for years,& think you will get certain surgeries associated with RA & find you are not covered...so just caveat emptor!

Like you I had years of Insurance covered treatment associated with RA. Luckily my RA has not resulted in needing any joint replacements or other in hospital treatment. ...just lots of ruddy pills, pills, pills, injections & infusions!

Now on the enrolment forms at my insco you have to declare lots of information that I didn't have to provide & I'm sure that is so the insco can read between the lines & put in place conditions that rule out on going treatment for RA conditions.

But the only way to continue to have Private Medival Insurance for life....is don't get old! Kinda difficult! Or I guess if you won the lottery you'd be covered...but you wouldn't need it then!

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Not sure 🤔 if we’re talking about the same thing. My corporate policies are not costed individually based on medical history, age etc. They are a ‘benefit in kind’ that has the same cost for all employees regardless of their medical history or age. The cost of the policy is negotiated by the company when renewing the contract with the insurer and each employee then pays the same amount based on the overall cost to the employer. It isn’t getting more expensive as I age, or more restrictive.

The only difference between what is available to me and to someone ‘young and healthy’ is that they will no longer cover the ongoing treatment of things they have decided are chronic, but they will still cover, for example, surgery that I need as a result of my (no longer covered) chronic conditions.

Personally I’m not sure that the advice to not declare a medical condition is such as good idea, in fact I know it isn’t. If you have a diagnosis of ‘RA’ and you don’t declare it, they will more than likely find out because they will ask your medical team about your health - and they will not lie to them (and omission of relevant facts = lying from that perspective). If you haven’t disclosed something that could (and will) invalidate your entire policy.

Unless I’m misunderstanding your post?

Personal policies, on the other hand, are massively affected by your age and pre-existing conditions and also tend to be more restrictive.

I dread to think how much it would cost me to get equivalent cover individually to the cover I have through my employer. And my wife could add me to her corporate cover tomorrow for the same cost as any other employee when adding a spouse (medical history disregarded). And the only thing not covered would be the treatment of RA and other pre-existing chronic conditions like DDD and degenerative scoliosis - even though these conditions are apparently not actually a chronic condition as such, but a reaction to external stressors like long-term medication, long-term stress on spine caused by needing a new knee for 5+ years etc.

Does that make sense?

🙏🏻

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Probably....it's a long time .... 1980's ....since I negotiated my company's Private Insurance scheme.

Our medical insurance was only available to senior employees & they didn't pay anything...it was included in their employment contract.

I don't know how old you are but once you hit 65 & are paying for it yourself as a past Group member, you don't get much change out of £500 PM, on London rates....& that was with a range of discounts. It did come down a bit when I moved out of London, but as my age crept up....so the the premiums!

Thank goodness I haven't had need of it recently,but I have found self paying is not the end of the world, & if you treat yourself to what you have saved on subscriptions it's really not too painful!

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It took me a few visits to me by gp as I collapsed because I couldnt get out of bed. At first querread some type of locked in syndrome as I was rapidly loosing ability to move. Gp said it would take 2 to 3 months to see rheumy. Thru my oh work we have BUPA so got seen in 2.5 weeks. Rheumy diagnosed me with RD within 10 minutes of meeting him (I was in wheel.chair as couldnt really move. Took couple of hours ish to get me out of bed to hospital). At one visit I told rheumy about gp timings and he said gp was wrong and that someone who has severe symptoms as me the gp should fax details to the hospital and the rheumy sees them at the same timings as private. This due to the need of early diagnosis. Told gp and they said they had never heard of that before. So who knows. Thats my experience of diagnosis timings.

Ps had been diagnosed with tennis elbow 2 months prior to this. Rheumy said that was the start of it all.

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Hi Ruth, thanks for the reply. Sounds like you had it very rough to start with, although diagnosed pretty quick. How are you now, on the right medication and is it working for you? It seems to me a lot of GPS don't really know a great deal about RA/RD. The 4th GP(Gp with special interest in rheumatology) I saw did say it should be treated quickly, maybe similar to Nice guidelines to suspected cancers, as it is such a life changing disease but there aren't the resources for it. Thanks for sharing your experience.

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I think cancer has a very high profile with strict waiting times, whereas other diseases have a much lower profile. Although hospitals do see people urgently if desperate, GPs seem unaware of it, and ours said if seen privately it excludes you from a fast NHS track. Untrue. It sounds as if you will be seen very soon now. All the best.

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Absolutely Norisa & thank you.

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I know it sounds silly, but because it was like id hit a brick wall at speed things did happen quickly looking back on it.

I was told on Friday that I am in .... my remission.... rheumy said thats because ive had 3 months of stable blood results. Even tho they are not quite within normal range, he said that its probably best I can be. Im now on 2 monthly blood tests instead of monthly, which is great. Im not like I was before all this but short version is im pretty ok. I can manage with help in the house and a stick when im out, and I can drive. I have pip and a blue badge. Which makes all the difference to my quality of life. Im on methx, sulph, hydroxy, steroids, paracetamol, dihydrocodeine, steroids plus other things like folic acid etc. No biologicals. Rheumy tries not to use them and my das score isnt high enough on above meds. I dont think the gp had much of a clue, mentioned a few things. Was very kind tho.

So thats me. I think im good really. As you maybe able to tell by the time 3.10am, sleeping isnt always good, but I rest. Rheumy says as Im tired a lot (feels like walking thru treacle most of the time) thats the thing to takle now. But as I say I think lifes pretty good. I do hope you feel that way. Keeping postive when possible helps, but can be a challlenge, but being on this forum is good. I do wish you all the very best. Sorry for long answer.

Do take care and be kind to yourself. 🙂

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Thanks so much for sharing Ruth & being so positive. I'm so glad you're in remission. I do find the exhaustion very difficult at times. Sleep patterns are not very good especially waking in the night in pain or with numb/tingling hands. I am being as positive as I can be 99% of the time as there is not a great deal we can do regarding the prognosis. It will be what it will be & I'll deal with it to the best of my ability. It is helpful to read such strong people's experiences & stories, because unless you're going through it, it I difficult to understand. Thanks again Ruth. Take care x

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My RA started in a very similar way. I can pinpoint the day - we were on holiday in October with friends in France. I went to my gp, who is the RA ‘expert’ at the practice. He did blood tests and I was referred to a rheumatologist. I bot an appointment in December and was also initially diagnosed with inflammatory arthritis. This diagnosis was changed to RA in March.

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It does sound very similar Helen. I'm glad you've got a definite diagnosis & and assume the meds have started to help you. I do feel some days it might not be happening & it might be in my head. But the next day or so it will come back hard. I wish you all the best

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I was diagnosed in 2004 so have been through a whole raft of meds. Although I can’t do things I did before diagnosis, and I haven’t had a pain free day, I am a lot better than I was in 2004! I hope you get on the right cocktail of meds soon.

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Thank you Helen. Because of all the different meds you've been through to feel as well as you can, has the progression of the disease been made worse because of that or has it been generally under control with the various drugs? I am glad you are feeling better nowadays but wish you pain free days. x

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Hi Fatfingers and welcome. As you will see all here have very different experience of early symptoms and timings of diagnosis. Some have reached diagnosis in just a few weeks and for unfortunate others it may have taken years. I first had episodes of painful wrists over twenty years ago and, following blood tests, was told I had the rheumatoid factor but was told to go and live my life. Over Christmas 2015 I got a heavy cold and chest infection which didn't seem to clear up. Several chest infections followed and I felt as if I had flu all the time. The pain in hands and wrist began that spring and gradually increased until just washing my hands was agonising. GP was useless said maybe carpal tunnel and gave painkillers. They finally referred to rheumatology but still hadn't sent the letter a month later. On 29th October I rang 111 who organised an emergency GP appointment at our local hospital and he was wonderful. Apparently he was a consultant GP and, I can't prove this, chased up rheumatology and I had an appointment three days later. Sorry for long post. I sincerely hope you get better very soon. Hugs

J

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Hi Gnarli, thank you for the reply. I can see the differences in everyone's story, regarding diagnosis times. It does seem to me that GPS should be more educated, and if anyone goes to their Gp with symptoms of RD test them for that first. Rule it in or out, as treatment is needed sooner rather than later to halt the progression. Surely this would save money in the long run for the NHS, earlier diagnosis, earlier treatment, less operations to damaged joints. Thanks for sharing your experience and hope you are as pain free as possible.

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I don't know what area you are in but 3.5 weeks sounds really good,.....& quick.Some poor folk on here wait 6/9 months for their first Rheumy appoinment.

Try not to worry, waiting under a month to see a rheumatologist won't have any major effect on your treatment.

Once your rheumatologist has examined you & seen your blood test results he will be able to prescribe any meds he thinks will help you.In the meantime he will be able to provide you with pain relief, & you will be assigned a Rheumy nurse who will be your main point of contact.

In a perfect world one is supposed to see their ..Nhs Rheumatology Consultant every 6 months. In the real world that rarely happens......you see one of the rheumatology team......unless your condition changes drastically & then you may get to see the Consultant.

On the whole it usually works very well.......but rheumatology is one of the Cinderella specialities & rheumies are very thin on the ground.

However as you are being seen so,quickly it sounds as if your area is very efficient.

Good Luck...hope you get a nice sympathetic Rheumy!

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Thank you very much for your reply. It does seem pretty good compared to others, but as you say rheumatologists are thin on the ground so different times for different areas. I'm in Bedford, and my appointment is at the local hospital, & yes hopefully I get to see a decent understandingrheumatologist.

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I suggest you see a dietitian and figure out what you’re eating that has angered your gut. The new term is “clean” eating and I believe in it wholeheartedly. It has changed my life. Secondly, a good probiotic along with tumeric and bosweila will work wonders. Take care!

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That very interesting that you say that, I have just finished The Clever Guts Diet book which is very informative. I intend to get started on the diet once my Kitchen is finished and I am able to cook properly. I have just ordered Probiotics, and Seaweed supplements and am also taking Tumeric in capsule and tea form, I am not sure what Bosweila is, but I will check it out. Glad to hear that a clean eating diet is helping you and hope that it will help me too.

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I don't know if my gut is angered or not, but I have changed my diet since not feeling well. Mainly fruit & veg & once in a while free range chicken. I don't think it's helping this particular illness but I have a lost a bit of weight so that is a positive. I have previously been on the 5:2 which was quite good(before illness) & my boss swears by the Keto diet. So I think food can help & hinder bodies, but you need to be careful.

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