First rheumatology appointment

Bones, joints and muscles
1

I have my first rheumatology appointment in a couple of weeks. I know my doctor suspects RA because I had a lot of morning stiffness before but I am just unconvinced.

I have pain in the joints of my fingers and toes, wrists, elbows and shoulder. But there is no visible sign of swelling. My morning stiffness was quite bad in the spring but it is much better now. 

My main concern are my neurological signs. 

My right hand has lost a lot of strength. There are some hand movements I simply can't do at all. I can barely make a fist and when I try it's exhausting. 

My left hand goes numb and tingling a lot, particularly at night. However, neither hand seems to have other signs of carpal tunnel syndrome. A neck MRI didn't show anything abnormal.

The feet and middle toes will go numb at will, regardless of position. I have virtually no reflex on the soles of my feet.

My hunch is:

- My shoulder is causing the problem with my right hand (it gets stiff and painful and has a very tender spot at the top) and there may be a trapped nerve up there which is causing the hand weakness

- My elbow is causing the problem with my left hand (cubital tunnel) as it would be bent at night, hence waking up with pins and needles

- My lower back is causing the problem in my feet (I get lower back and hip pain at night, often)

None of this explains the joint pain though. But I'm 37, it's possible it's a bit of OA. 

I just don't think it's RA for some reason. But I can't explain why all these things would happen at once.

Anyway, I don't know what to expect from the rheumatologist. Are there any things I need to know? Any tests I should expect? I'm worried that they'll just look for signs of RA, rule it out and fob me off without helping the real problem.

Thank you.

2

Take a friend with you and a notebook.

Expect blood texts and x-rays.

Even if your blood is RA sero-negative you could still have RA (certainly sounds like it). 20% sero-negatives need clinical diagnosis.

The treatment is the same.

Ask questions and get your friend to ask questions too. Do a sum-up together afterwards to find out what you missed and keep it all down on paper for next time.

Trust your rheumy until he/she gives you reason not to.

Stay cheerful and upbeat!

Good luck!

 

3

Hi

i took someone with me to the first rheumy appointment I had. I wanted a second person to help me remember what they said and I m really glad I did.

They ask your symptoms, any RA in family , smoker or not. They may already have, or will do blood tests and you may have other tests done eg hand or feet X-rays. I guess it depends what you have already had done.

Don't forget there are are other conditions as well as RA that a rheumy covers, but they will look carefully at joints and listen carefully to symptoms. I wish someone had told me to jot down all my symptoms before going in. ( so I m giving you that tip now!)

You are aware they re busy people and time is precious BUT I have been amazed at how much time you re given if you need it and they were happy to clarify things I didn't understand. So if you sense time pressure, it s not usually that they don't care but that they really have a big workload.

i have read a lot on NRAS and arthritis research websites as things have come up and they have been useful as I ve had so many questions.

I hope you get a helpful appointment with the beginning of a treatment for whatever they discover.

IF they do end up diagnosing RA it is a shock, but for me it was the beginning of treatment which is now having a good effect. Even the treatment is a bit trial and error as people respond individually to different drugs, 

so hope it is a step forward for you.

 

4

Ah!

Light beat me to it with her reply and put it so much better!  

Yes- like the bit' trust them until they give you reason not to'

5

There are all sorts of arthritis and some of what you describe fits - but the rheumy will do tests to see what he can find. There'll probably be blood samples to be taken if your GP hasn't done any and probably some more more specialised ones that a GP wouldn't do. Probably x-rays. And of course it will start with a detailed physical examination and taking a history - so don't be shy to write it all down, dates and symptoms and any treatments that did/didn't help. In fact - as the others have suggested it might well be worth taking someone with you to make notes - because you won't remember the half that is said to you!

And as Light says: trust them until there is a good reason to make you question what they do/say. But worry about that then.

On a slightly different approach - on my PMR forum when people complain about some of the symptoms you mention we suggest a few sessions of Bowen therapy to see if it helps any of it. Gentle and 3 sessions will show if it is going to help. If it doesn't - you needn't carry on ad finitum. But many of us have got quite a bit of relief for back and shoulder muscle problems.

6

You certainly sound as tho you have a systemic inflamatory problem. RA isn't the only flavour available - there's Lupus, Fibromyalgia etc etc...... The Rheumatologist will identify which one it is and go from there. You may test positive for RA factor. If not, diagnosis becomes harder. This is why your doctor won't want you to teat your symptoms, because the Rheumy will use 'disease activity' to confirm a diagnosis. Knocking the inflamation on the head will give false results so try and tough it out over the next few weeks.

Your rheumy will definitely test for CRP which measures the rate of inflamation in your body. Anything higher than 4 is bad. (mine was 72!!!) Blood count is checked too, to see how active your immune system is.

They will check your kidney and liver function to see if they're under attack and to see if they can handle the DMARDS - Disease Modifying Anti Rheumatic Drugs. They will also do tests to see if muscle is under attack - your heart is a muscle. Xrays are done to set a base line for comparison later, to make sure joint damage isn't getting worse. You may get a short strong dose of steroid - Prednisone, to get the inflamation under control quickly.

Be careful with NSAIDs - Non Steroidal Anti Inflamatory Drugs like Brufen or Nurofen. They don't mix well with DMARDS and you are likely to be given those.

 

7

All complicated by seronegative doesn't mean you don't have RA but you can be seropositive and perfectly healthy! Then there is polymyalgia rheumatica which LOOKS like an arthritis but is a vasculitis, doesn't respond to DMARDs but does to pred - and then you need pred to manage it, not in the form of a short sharp course but a lower dose longterm, often for years. No wonder it all seems so complicated!

8

Thank you. 

There is lupus in my family but I think my antinuclear test was negative.

I'll be honest, I dread getting a diagnosis of fibromyalgia as I'll always be wondering if they just overlooked a different kind of problem.