Good RA consultants

[Ivor13]

Hi - I may have RA but having issue with my doctor as blood test come back negative but have sudden joint pain in most of my joints for 4 weeks, lethargic but no swelling. Is anyone aware of private consultants in NW London/Herts or East London/Essex who are very good?

[lupus_01]

What blood tests have you had?

[Ivor13 in reply to lupus_01]

ue, liver, bone profile, urate, fasting lipids, ccp full blood count, esr, crp, rheumatoid factor all negative, next blood test is electrophoresis and anti nuclear antibodies. I am in pain in all my joints ans cannot get my doctor to refer me quickly.

[Hidden in reply to Ivor13]

Hello Ivor,

I have sero-negative RA. Only two months after the GP getting the blood test result which was negative for rheumatoid factor, I had gone from getting around quite well to being unable to get up from a chair. We bought a wheelchair! After aggressive treatment from a rheumatologist, I returned to being able do almost everything, including hiking.

You must insist on a speedy referral to rheumatology. Simply being negative for RF does not rule out RA or some other inflammatory arthritis.

[Ivor13 in reply to Hidden]

How did they find your condition?

[Hidden in reply to Ivor13]

I was initially referred to Orthopaedics because my knee was very swollen. They ordered an MRI scan. Over the period of waiting for the scan and then for the results, the problem spread to the other knee, also the backs of my hands puffed up. Ortho decided I was not suitable for their treatments and passed me over to rheumatology, where I had masses of tests done and RA was pronounced to be the answer. Then it was straight into aggressive treatment.

You must keep insisting on a referral.

[Hidden]

You can have RA with negative blood results, but there are also a number of other types of arthritis where bloods including esr and crp are often negative. As jacks of all trades, GPs don’t always seem to be aware of this. Does your pain improve with use/as the day goes on or does it get worse with use?

[Ivor13 in reply to Hidden]

Hi it gets worse during the day, it started very rapidly and moved to feet, elbows, wrists, hands and knees, have pins and needles and bloods all negative, local doc says not RA. Thank you for responding

[Hidden in reply to Ivor13]

With the usual caveat that I’m not medically qualified...

Although you can get them in a specific area if inflammation in a joint is impinging on a nerve, widespread pins and needles would not be typical of inflammatory arthritis, and broadly speaking, pain and stiffness from R.A. and similar tends to improve (at least a bit) with use and throughout the day. Stiffness can flare if stationery for a while, but pain doesn’t tend to get persistently worse as the day goes on: osteo and mechanical arthritis do tend to get worse with use and as the day passes. My purely inflammatory joints ease with use, my knee with both inflammatory and OA often gets worse the more I use it. I’m wondering if the GP is dismissing the possibility of R.A. on the grounds of the bloods *and* the symptoms you’re reporting. Obviously that doesn’t help you, though, if you’ve got ongoing symptoms of something, so they do need to try and determine what’s going on. Has the GP made any suggestions as to what they think it could be if they don’t think it’s inflammatory arthritis? I think I’d be having a further conversation with them about what their rationale is before paying for a private rheum consult.

[Ivor13 in reply to Hidden]

Hi Charlie, thank you for your response, I am getting little help from my doctors as bloods are negative, my symptoms are that firstly my fingers were painful on both hands, this then moved to my big toes then tingling all over my feet and hands, my feet on occasions feel wet when they are dry, this then moved to both wrists, elbows, ankles and knees, if I don't move them they are fine. Now and again I have no energy and need to lie still, sleeping is hard and may get fours hours continuous if i am lucky. In the morning my hands are numb for a few minutes. My main worry is that of not being able to walk as I can only walk for about two minutes before my knees are too painful. By the time I get referred a lot of damage may have occurred.

[Hidden in reply to Ivor13]

I understand where you’re coming from, and you’re absolutely right, if there is an inflammatory arthritis element, the sooner you’re seen and started on treatment the better, but what you’re describing doesn’t sound like typical inflammatory arthritis symptoms from my understanding. As I said, I’m not medically qualified, but pins and needles and altered sensation (the feeling wet) in the absence of any physical swelling sounds much more like peripheral neuropathy - a nerve issue - than a joint one. I used to get PN with another condition I have, and there are rheumatology conditions that have it as a symptom, but arthritis isn’t commonly one of them And it’s a symptom of all sorts of other things, too. Numbness in the hands would also fit more with a nerve issue: some people with inflammatory arthritis do wake with numb hands in the morning (I’m one of them), but it’s normally the result of either a coincidental nerve impingement such as carpal or cupital tunnel syndrome, or exactly the same nerve impingement being directly caused by inflammation in the relevant joint. In my case, the nerve issue is actually separate to my arthritis. Out of interest, are you diabetic? If not, have you been checked for diabetes via an HbA1c blood test recently?

[Ivor13 in reply to Hidden]

Hi Charlie, yes normal range for glucose, also my joints were quite, now when I move both knees click as does my other joints. On the painful joints there is no swelling.

[Brychni in reply to Ivor13]

GPs I saw were also dismissive including a personal friend who, in the consulting room said "I am 100% certain it's not anything inflammatory." Mind you, she wasn't rude like one of the others who was just awful and kept asking me about my marriage.

Also, I was reporting intermittent pain and strange symptoms and in fairness it was vague. I was referred to rheumatology twice and the second time I was sent for an ultrasound on my wrists and that was where it was found.

I just knew there was something 'wrong' beyond mechanical problems. Although I had accepted it after being told it was not anything autoimmune and I insisted that I had physiotherapy to make sure that I could manage the pain myself and learn how to do exercises properly. It was literally the day after a totally pointless 'back pain clinic' that I got the letter telling me to go straight back to rheumatology for the third time. I was told it was Undifferentiated Inflammatory Arthritis and given hydroxychloroquine which has done nothing! Starting methotrexate soon after not being able to tolerate sulfasalzine.

Keep on at them. Good luck.

[Ms-D]

Hi i saw Dr Mittal at royal national orthapaedic hospital. She works private in wellington hospital or Spire in Bushy. She has been amazing for me both on private and nhs. If you would like more info private message and will forward all numbers.

[Mmrr]

I am seronegative and had a long hard struggle with my GP to be taken seriously.

It might be worth going back to your GP and asking if you could have seronegative RA, if not why not ? Ask for an explanation of their thinking, if not RA what alternative diagnosis could your symptoms be ?

A wee reminder to the GP of the need for a quick referal and treatment being the best option for good control of RA might be useful too.

Politeness and firmness are often needed for action.

[magliona]

Hi Ivor

You can ask to be referred to a rheumatologist . You don’t have to go private. As others have said it could be your bloods were negative but you still have R.A. as was in my case. The sooner you are diagnosed (or not) the better. Personally I would prefer it to be ruled out by a specialist than a gp. Not down crying gps but it would be better if a specialist saw you.

[Ivor13 in reply to magliona]

Hi Magnolia, i have asked my doctor but there is a long waiting list and as my bloods are negative she is not prioritising me. thanks

[magliona]

Although there may be a long waiting list it will get longer if she doesn’t refer you. I should ask her to refer you and at least your e on the waiting list. When you go private which is fine but unless you’re covered insurance wise it could cost a lot xrays etc. Unless the specialist will see you on the NHS once they have seen you. You will still need a letter from your gp to refer you to them.

[magliona]

She can’t refuse if you ask her

[Ivor13 in reply to magliona]

Hi - How did they find your RA diagnosis?

[magliona in reply to Ivor13]

I have had R.A. for over 30 years.mine started like yours but it took a lot of straight talking to my gp to get things started. Luckily I worked with Drs in a hospital ( I worked in ITu) and they told me that I should see a specialist and that I should be confident in saying this to my go.

[Ivor13 in reply to magliona]

If RA affects my knees could this result in me not being able to walk this is my main concern as I look after my disabled wife?

[Brychni in reply to Ivor13]

The guidelines for getting people back into the consulting room for medication after diagnosis is THREE DAYS. Damage is swift and irreversible.

youtube.com/watch?v=HguQAqf...(Not working as expected?)

[magliona in reply to Ivor13]

Hi Ivor

Have you explained this to your gp. Are you taking pain killers? I think if I were you I wiser a specialist privately who may then give you an opinion on if it’s RA and maybe be able to give you something to calm it down. Initially you may find problems walking but if you’re treated then it could subside.short term anyway until they get you on to the correct treatment. I think if you are not managing with looking after your disabled wife I would ask for help. This does not mean the care will be taken away from you but they can help in the interim period. If you ask your gp they will refer you to social services who may be able to provide you with some help while you’re going through this hiccup. Don’t get disheartened and don’t suffer in silence. Ask for help. I know it’s hard to ask for help I’ve been where you are but once you get on track again you will be back to normal hopefully. Ivor don’t try and manage on your own when you’re in pain as it’s of no benefit to you or your wife. Go back to your gp and pester them till you get help.

[Brychni]

This is also very informative. It's more about symptoms but more detailed than any other descriptions I have heard/read.

youtube.com/watch?v=P7KqqaJ...(Not working as expected?)

[AgedCrone]

Have you investigated Osteo Arthritis rather than Rheumatoid? You can self refer to a private consultant if you are self paying, but if you intend using medical insurance you will need a GP referral.

[CallMeSunny]

Hello Ivor. I’m sorry to hear you’re in pain and struggling to get help. You might find some reassurance (especially as it’s a Bank Holiday) regarding how to move forward towards prompt diagnosis and treatment by telephoning the helpful and knowledgeable team at NRAS (see website). They have helped many members of this forum. Good luck, we will be rooting for you!

[Ivor13 in reply to CallMeSunny]

Hi they are very helpful but need my GP to fast track me, they keep telling me it is not an auto auto immune problem, my wrists are especially painful, have painkillers and they help a little.

[CallMeSunny in reply to Ivor13]

I took the decision to see a private consultant (one who also works in the NHS), as the earliest of the 3 different hospital appointments I was offered by my NHS health board after an Urgent referral from my GP was 23 months! The initial consultation was expensive, subsequent ones much less so plus she has phoned me on several occasions to check on things and hasn’t charged for those. I intended to transfer to her at her NHS clinic before COVID but in fact, as she now thinks I should be having Biologic drugs, she has written to my GP to ask them to urgently refer....wonder how long this ‘urgent’ will be. The main thing is though that I was seen within a week of phoning for an appointment (GP wrote explanatory letter) and started on medication 2 days later! Could you perhaps see or speak to a different GP at your practice and stress how the pain etc is impacting your life, particularly as you have a disabled wife.

[MJSlide1958]

I only know that Dr Hugh Jones is a very good Rheumy but he works at Kingston Hospital, Surrey (nearest Station is Norbiton from Waterloo) and has a private wing too. Good luck whoever you are able to see.

[crashdoll]

Hi Ivor13 . I am getting excellent rheumatology care within the Royal Free NHS trust. I’ve had (antibody negative) RA for 11 years.

[Sallysuk]

Hello Keep persisting with GP or see another one in the practice and perhaps suggest to them that you are so miserable and distressed that you want to pay privately if they will not refer you to NHS. I seem to be so fortunate as I saw a rheumatologist two weeks after an urgent referral by my GP as I had sudden symptoms like you. My blood tests were negative and even the consultant was doubtful I had RA thinking it was osteoarthritis but a scan, within a few days, indicated RA. Two years on and taking methotrexate and sulfasalazine I feel almost normal again.

[Ivor13 in reply to Sallysuk]

Hi thank you - was your scan an MRI and was it for one area, I have also contacted my MP to see if she can help, with Covid this is very difficult and my doctor. My joints were silent and they are all clicking. The only relief is lying down still. Thanks

[Sallysuk]

I had lots of X rays for feet/ shoulder/knees/ chest and an ultrasound scan on my hands and wrists. The doctor( not radiographer) who did the ultrasound told me immediately that I had RA as there was so much inflammation although it was the rheumatologist who made the final diagnosis. My rheumatology department have been excellent but my husband attends the dermatology department at the same hospital and his experience is poor so I know how frustrated you must feel.