Still no diagnosis : Well today I saw a private... - NRAS

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Still no diagnosis

Ivor13
Ivor13

Well today I saw a private Rheumatologist and nearly £300 down no answers, does not know why I have lost a stone in weight, can hardly walk and have no energy, all joints hurt, on my left hand fingers now go to sleep after being in same position for about 30 minutes and starting to get very depressed. All this happened in just over one month. He said previous bloods okay and manipulated joints, noted that my neck had restricted movement. Said no inflammation so not RA but advised knee creaking but was fine before this started. Advised CAT scan on my torso stomach and pelvis and throat swab on my throat that on occasions has a burning feel to it and stops me talking. Sorry to moan but am feeling very isolated and cannnot see and end in site. How can it be that I was walking fine and now can just manage a few steps. This Rheumatologist works for Barts, not sure what do do next.

53 Replies
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I’m sorry your struggling with this. Try talking to a different gp to the one you have had if you’re not happy with the one you’ve got.

I'm really sorry to hear this Ivor. What a waste of money and you're no further on. I agree with ba, can you try a different GP or you could ring the NRAS helpline on Monday and ask their advice. helpline@nras.org.ukFreephone Helpline: 0800 298 7650

Good luck - let us know how you get on.

Ivor13
Ivor13 in reply to springcross

Changing GP not ideal with Covid and the doctor agreeing to pay for RA drugs if Rheumatologist agrees, called helpline previously helpful but need a diagnosis.

bubblyalex
bubblyalex in reply to Ivor13

If your diagnosed with Ra privately or otherwise your gp can’t refuse to pay for the treatment.

You don’t need to change docs just ask to see a different one ... doesn’t need to be a big deal. Second opinions and all that.

Ivor13
Ivor13 in reply to bubblyalex

In my doctor there are only 3 the senior partner and two others, with only one half decent. I may be wrong but if private consultant starts you on more expensive ones they can refuse, sorry if this is wrong

bubblyalex
bubblyalex in reply to Ivor13

I am still a novice at this ... but not sure you would be started on biologics at the beginning anyway. From what I see now (months down the line) everyone starts on the DMARDS and if those work then all the better? I hope this works out for you. With Ra being the way it is ... the complexity and trial and error ... putting money into trying to get the answer when you’re possibly going to need that money to help you out with adaptions for your needs .... only if this is what it is...

I think taking to the NRAS like springcross has said would be well advised before more expense.

Ivor13
Ivor13 in reply to bubblyalex

All I want is to be out of pain and there is a 20 week wait for urgent appointment in Ilford fo rheumatologist

springcross
springcross in reply to Ivor13

Your GP should be advising you on pain reflief Ivor to tide you over until you get an appointment. Ba is right I think in that you will be given DMARDS as first line therapy before biologics. I'm pretty sure it has to be certain circumstances for that not to happen. Ask your GP to prescribe pain relief for you for now. AgedCrone has given good advice as that's an awful lot of money to pull out, especially as you say it's your retirement fund.

Ivor13
Ivor13 in reply to springcross

He had given me co cofomol for pain but pain is still bad

springcross
springcross in reply to Ivor13

Can you ring the practice and let them know that it's not adequate for your pain?

helixhelix
helixhelix in reply to Ivor13

They can refuse. In theory only NHS specialists can prescribe biologic drugs.

Sorry to disagree bubblyalex but your GP can refuse to pay for Specialist-prescribed meds & I fear with prescribing budgets being so tight this may become more commonplace. If they agree to signing a shared care agreement, which includes taking clinical responsibility, monitoring etc, then the Practice pays. If he/she says they're incapable then he/she can insist the hospital assumes responsibility for meds.

How sad it is to think that behaviour like that goes on. Seems like getting on the specialists nhs list is even more important.

Even more grateful for my doc who so far hasn’t batted an eyelid at anything he’s been asked to help in.

Ivor13
Ivor13 in reply to bubblyalex

You have a great doctor mine just provides lip service. If anyone knows a good private rheumatologist in Ilford or Hendon who is not geared more towards the fee than care please let me know.

It’s not the GP Practices who control the prescribing budget, they're at the behest of the local CCGs (Clinical Commissioning Groups) unfortunately. Practices are given a limit relative to their patient list that they can prescribe up to & savings such as prescribing cheaper generic meds are channelled back into front line patient care. There's lots more to it than patients often realise, unless you work in the sector of course.

Oh this is so interesting NMH, I had no idea about how it all works! My GP has agreed to shared care with me and they have been so supportive in every way. I appreciate how lucky I am to have such a great health care team full stop!.

Ivor13
Ivor13 in reply to Summerrain14

You are very fortunate, can you have RA and no swelling

Summerrain14
Summerrain14 in reply to Ivor13

I am very fortunate as you say. I have a great GP surgery and rheumatology team. I am not sure if you can have RA and no swelling as I tend to have a lot of joint swelling my RA. It did take a bit of diagnosing as my bloods were negative for the rheumatoid factor so am diagnosed with sero negative RA but the treatment is the same regardless. I really do hope you can get a diagnosis to what is causing all your pain. I am still pretty new to RA myself as only been diagnosed for just over a year but had symptoms for around two years now. Again I was fortunate that my rheumatologist saw me several times and the ultrasound scans and examination of my joints etc all lead to the diagnosis and now on medications. I would agree with what other people have already said and ask your GP about possibly having a course of steroids as this can often help in the diagnostic stage too. Please don’t just struggling on with the pain what ever.

Ivor13
Ivor13 in reply to Summerrain14

Hi thank you for the advice, how do steroids help with diagnosis I will try anything at the moment that can work out what is wrong with me.

Summerrain14
Summerrain14 in reply to Ivor13

If your pain eases/stops with a course of steroids then it is suggestive that the pain is due to inflammation within your immune system. I understand you can have inflammation even if no visible swelling necessarily. RA as you may know is a type of inflammatory arthritis unlike osteoarthritis which is not. Knowing if you have an inflammatory form of arthritis is part of the process of diagnosis. Hope this helps a little? It would be good for you to have a chat with NRAS as others have said as they can help with knowing what questions may be useful to ask when speaking to your GP. None of us on this forum are able to offer any medical advice at all but NRAS have lots of useful information and are very supportive. The key is to get to the bottom of what is causing this awful pain for you. Hope this helps a little.

springcross
springcross in reply to Ivor13

What a nuisance for you. Is your GP to arrange the CAT scan and do the swabs?

Ivor13
Ivor13 in reply to springcross

If I want to wait in pain for weeks or months yes otherwise just short of a grand, this was my retirement fund. But if it gets me out of pain then I am happy

Oshgosh
Oshgosh in reply to Ivor13

I agree with you that’s it’s not a good time to change GP. Your notes need to be available,perhaps see a different gp in same practice.these things are awful to diagnose.

Have you got a referral to an NHS rheumatologist?

Have you asked the rheumy if he will put you on his nhs list at Barts? He probably won’t just offer you know.

If you gave him you GPs details he will send him a report in due course...so ask the the practice secretary to let you know when that comes through & hopefully your GP will go ahead with arranging the CAT scans...& possibly arrange for you to see either the Rheumy again on the nhs, or a different specialty consultant.. ...depending on the scan results.

Diagnosis take a time you know....your doctors will need to see the scans to confirm what they are looking for...the rheumy must have some ideas as he needs the scans.

So cheer up...you have made the first move....now you just need to follow up with your GP.

Ivor13
Ivor13 in reply to AgedCrone

The rheumatologist does not think it is RA based on negative bloods and no swelling, the CAT is for my weight has gone down by a stone. The scan and swab are being done privately as I cannot wait ages for a NHS appointment

bubblyalex
bubblyalex in reply to Ivor13

AC makes a good point about asking if you can go on his NHS list so he can still get these tests for you.

Ivor13
Ivor13 in reply to bubblyalex

Does my doctor need to do this and will this then take me off my existing waiting list

bubblyalex
bubblyalex in reply to Ivor13

Would coming off that waiting list matter? Unless you aren’t happy with the st barts rheumy?

Not sure on the exact way it’s done. Though I would imagine your rheumy can sort out the paperwork with your gp. Ask the rheumy first ... not your gp.

AgedCrone
AgedCrone in reply to Ivor13

Well when those results come back your GP will know which consultant you will need to be referred to...or as the Rheumy has ordered them he will suggest who you see....Then depending on the urgency you should be able to see someone on the nhs.

Even Privately done scan results can take a week or two ...so try to relax & wait see what the scans show.

This would be dependent on the waiting list s Barts, further if the Rheumatologist thinks it is not RA not sure this will help

bubblyalex
bubblyalex in reply to Ivor13

Not really... you’ve already got your foot in the door which means you’re already fast tracked through what is a long process.

Springcross is right about calling the gp for better pain relief.

I’m on naproxen codeine paracetamol prednisolone and all the RA meds. You aren’t taking an anti inflammatory for a start.

AgedCrone
AgedCrone in reply to Ivor13

If the rheumy does decide it is something he can deal with, you have to tell him you would now like to transfer to the nhs....if he agrees & depending on the urgency he will arrange that.

Rehumatologists deal with all sorts of conditions besides RA....so it is just waiting to see the swab/scan results.

For £300 did the rheumy suggest any other differential diagnoses? Or suggest referring you to other specialists? Seems very unfair just to leave you hanging, so sympathy.

You could also ask your GP for a short course of steroids? Sometimes with negative bloods this is useful as a diagnostic test as if you respond well then despite no blood markers it tells doctors a lot.

Ivor13
Ivor13 in reply to helixhelix

Only osteoarthritis but how can all symmetrical joints be affected at the same time with this, only suggestion was cat scan and throat swab. Can your bloods be negative, no swelling and have RA?

helixhelix
helixhelix in reply to Ivor13

Yup, but there is usually something and even if no obvious swelling rheumies can feel “boggy”joints that are indicative of RA. Did you have every blood test under the sun? As perhaps need to discuss options with GP.

Yes all blood tests and could not feel any boggy joints, but lost lot of weight waste was 38 now 36 in a month and all symmetrical joints painful, not sure what else I may have,

You really need to see your GP. Obviously something isn't right. You need a diagnosis to know what treatment you need. Ring tomorrow and ask for an urgent appointment. Good luck.

The way things are in the NHS at the moment all the waiting lists are long for all sorts of illnesses. My husband has been waiting for an appointment with a the respiratory consultant and has been told it could be about 18 weeks for the appointment to come through. Also waiting for a multitude of diagnostic tests since March and only had the 2nd one last week. He is still waiting for 3 more. We have been to A&E twice because of his breathing difficulties and now waiting for home oxygen which may take 6-8 weeks. So if I were you I would go back to your GP when he/she gets the private drs report and ask for effective pain medication eg prednisolone because if you have inflammation which isn't always visible you will get some relief at least. It's no fun when you are in pain and try and drive the point home with your GP.

I saw a private Rheumatologist who eventually referred me to one on the NHS who specialises in Sarcoidosis. I’m seeing him and his resident as well as a neurological ophthalmologist to address my optic neuritis. All this to say you should really see more than just one if you’re current RA is stumped. Also, it took a year and many tests - MRIS, Ct scans, biopsies before I was given a 95% diagnosis. Wishing you better luck soon.

Ivor13
Ivor13 in reply to K9910

Hi I did see someone at the Spires in Bushey initially and recently the Bart's rheumatologist, neither know what is going on, whatever it is attacking my left knee especially as well as my other joints and unless I they do something soon will be in a wheelchair, as my wife is disabled and could not look after me the future is not very bright.

Did they put you on steroids? I was unable to walk, put on shoes, wear a watch (!) until my GP took pity on me and put me on Prednisolone while I waited for my second appointment with the RA.

Ivor13
Ivor13 in reply to K9910

No diagnosis based on bloods and no inflammation and joint movement is no RA looking at doctor Google this may not be correct

you'd think that for £300 he would have done an ultrasound scan!

i'm in denial at the moment, about starting methotrexate, not diagnosis - have had a diagnosis of Undifferentiated Inflammatory Arthritis in March (starting to hate typing the words) . I'm looking for answers and have a zillion questions but just today I read the summary of studies which have formed the basis of diagnosis and treatment of UIA and it stresses the importance of scanning of 'asymptomatic' joints such as the wrists. This is where my inflammation was found.

These diseases can cause permanent damage to major organs and is closely linked to atherosclerosis.

Ivor13
Ivor13 in reply to Brychni

Not ideal but you have a diagnosis and although there may be side effects they will monitor you to try and prevent these. My issue is that no one seems to know what is wrong and going private seems is that the fee clouds there judgement.

Have they checked your thyroid? I have RA but I also developed graves 2years ago.I have/had same symptoms your disgribing.

Hi had blood test for thyroid and was okay

I believe that ‘normal’ thyroid results should be checked, to see what the lab said. Please get a print out, normal is a very over used word with regard to thyroid hormone blood tests.

Also I suspect you may have a B12 problem. B12 is also a medical mine-field and I suggest you do a little research before speaking with your dr again.

Hobbledehoy
Hobbledehoy in reply to linda96

Reply to Ivor:

Ivor, it would be an extremely serious mistake to use your retirement funds. Private bills will use it up v quickly & you may not be much further on. It is not necessary, the knowledge & expertise exist within the NHS. Medical conditions like RA are highly complex & individual. There is no quick fix, however much money is spent. Try to acquire pain relief, & then prepare yourself for the long haul. These are unprecedented times, but be assured that you will be treated. Endeavour to help the doctors to help you. Good luck & best wishes.

Can you take ibuprofen.

it's tough but dont give up.

After initial NHS I too paid to see a 2nd private consultant. a Prof' 'top man' in london. he said I didnt have RA. but pmr. long story but 6/12 later and 3nearly 4 years in, I paid again (3rd time lucky) to see a different rheumatologist. my wrists a bit painful/swollen, problem feet. he diagnosed RA by doing an MRI with fluroscopy...this is important as it shows damage to surrounding tissues not just bone.

RA seems a difficult thing to diagnose with huge variations.

4 mistakes made in my care were:

1 I needed 40mgs prednisolone to control pmr type symptoms at the beginning, this should have alerted Drs that I did not just have pmr.

2 ignored pains in hands and feet.

3 All my antigen blood tests were negative and 'normal' which can happen with 20% of people with RA apparently

4 they did not do the MRI with fluroscopy early on.

keep careful notes on your symptoms and take Q list with you when you see Dr

cheer up...really hope you get answers soon...not knowing and frustration that comes is hard to deal with...I know

rushing off on holls and out of wifi now

NRAS is a wonderful resource and help

Ivor13
Ivor13 in reply to Trutta

Hi enjoy your holiday who did you see in the end

Hi Ivor

If rheumatologist rule out RA have your Drs thought of seeing a neurologist. My mum who has RA and has sore joints and feet and describes it as burning pain and has no alteration in her blood has been told it is more likely to be nerve pain and is going to see a neurologist and is going to a pain clinic. Has a pain clinic been suggested?

Hi this does not explain the actual pain in my joints that is causing me agony, if I try and move

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