Rheumatologist's verdict

Elmbow

It's a while since I first/last posted here as I was concerned about the possibility of some form of arthritis - I'd started to have pain in the small joints of hands and feet, wrists, elbows, shoulders, numbness, morning stiffness and generally feeling like something was wrong. Plus, lots of autoimmune diseases in the family.

Initial blood tests were normal but I was referred to a rheumatologist. It was frustrating and didn't feel like we went into much detail. Now waiting for an ultrasound on hands and results of anti CCP test but the consultant doesn't suspect rheumatoid arthritis. She thinks I have carpal tunnel syndrome.

Like me GP, she didn't look at my hand when I told her that I had weakness and lost function. I mean, why does nobody seem bothered by the fact I've lost some use of my right hand?

Notes say diagnoses are: arthralgia and paraesthesia. I don't think these are really diagnoses; they're just medical terms to describe my symptoms. Also notes metatarsalgia as residual to an episode of gout.

I have a lot of pain in both wrists but don't think carpal tunnel syndrome makes sense. Tinel's sign was negative. Numbness is in whole of left hand, sometimes forearm, sometimes tingling in little finger and sometimes triggered by reading book (e.g. bent elbow). Also, no hand weakness in left hand. Doesn't that suggest cubital tunnel syndrome? Right hand has no numbness, severe weakness and tendon swelling, plus pain at base of thumb when I try Finkelstein test myself. Doesn't that suggest De Quervain's?

I can accept her findings but it doesn't really help me. So, I have joint pain, morning stiffness, carpal tunnel syndrome and some kind of tendon swelling in my hands and metatarsalgia, reduced hand function, possibly cubital tunnel syndrome as well, possibly De Quervain's as well - that all came on at the same time - but apparently there's no single cause for all this? This is all one big coincidence?

Just sounding off. So fed up. I've been in pain for months now and seem no further to getting real help. For my own peace of mind, I at least want to know my hand isn't going to get more useless.

Thanks for listening.

stickywicket

Hello again, Elmbow. I'm sorry you feel your no nearer a clear diagnosis. Sometimes these things can be long drawn out and not particularly clear. Also I don't think docs are as into the visual examination stuff these days as the tests tell them far more.
On the plus side you've now seen a rheumatologist and had some tests, including the ultra sound. The fact that the rheumatologist doesn't think you have an autoimmune form of arthritis doesn't mean you don't have osteo. That's not autoimmune but might account for your pain. Your GP could tell you more than I about that. And carpal tunnel can be very painful. That can be remedied with an operation.
As for the other things you mention - cubital tunnel syndrome, the Finkelstein test and De Quervain's – I'm afraid I've never heard of any of them. Maybe your GP could help with your queries about these too.

There are no guarantees with any form of arthritis. It doesn't usually improve with keeping but the symptoms can be alleviated with judicial rest and exercises. (Has anyone suggested physio?) Do feel free to come on here when things get a bit overwhelming as we do understand that even when we can't help.

Please let us know when you have further info about the scan.

trepolpen

hi Elmbow , as stick said some times its takes a while to get a diagnosis , I was positive for RA & they still took two years to tell me its was RA even thought my GP told me after the blood test

only thing is you maybe can get a second opinion and ask to be refered to another rheumatologist at some point ,

Elmbow

Thanks both. Just talking it through helps keep me sane while I impatiently wait...

I know it takes time. I think it's just frustrating on many levels.

But the most frustrating thing was that the rheumatologist's questions were very specific and I didn't really get to talk about what was really bothering me.

I am not convinced I have one thing or the other. But I need to know what I'm dealing with and I don't know if doctors understand why that's so important. A year ago I was fit and active, jogging and climbing. Now I struggle to walk up stairs (I'm 37) and I don't know what to tell people when they ask me why.

Patience........ 8)

Melanie17

Elmbow-I too went to see a rheumatologist for the first time on 17 November and my experience was similar in that she didn't really listen to me.Whilst questions were asked(many) and I was so glad to be getting some help at last,she definitely wasn't hearing what I said.Maybe,as the previous forum member mentioned,this is because they rely on diagnostic testing.After 2 cancellations I was so glad for this appointment and when I left I felt good from the viewpoint that bloods and x rays had been taken,so I was on my way,but unhappy because I felt unable to express myself.

Elmbow

Hi.
I had my hands and feet ultrasounded today. ****'s law, on a day when I was largely symptom-free.

The ultrasound man said there was thickening in the lining of a few joints, which was not uncommon. He said there were no signs of active inflammation and nothing to suggest a diagnosis of anything.

I have a feeling this is going to be a looooong process. :areindeer:

stickywicket

I'm sorry to have to say it but I think you're right.

I would assume that ultrasound results would not be dependent on whether you were currently feeling pain.

I'd suggest waiting until you / your GP get the reports back from rheumatology and ultrasound and take it from there.

The only other thing that comes to mind is that you say you used to be very fit – jogging and mountaineering. You don't take any dietary or herbal supplements do you? They can cause problems sometimes.

bubbadog

Elmbow I won't tell you how long it took for me to get my diagnosis, but all I will say is get comfortable and I hope your not impatient!!
It does take a long time and you do have to go through a lot of tests but it will mean when you do get a diagnosis you can get the correct treatment and you feel some improvement. But the problem with Arthritis is it likes to pop up on other joints as well and that doesn't mean it will necessarily mean it's the same type of Arthritis! I have 2 different types of Arthritis on my joints!!

Elmbow

Thanks guys.

Stickywicket, no I've never taken any supplements. I have a fairly okay diet; not the best but far from the worst.

It seems that the GP's hypothesis of RA is very unlikely. All the focus has been on testing and diagnosis. Now I just want to focus on treating the pain and living normally.

:areindeer:

dreamdaisy

The human body is a weird and wonderful thing, in our cases mostly weird and not that wonderful. The first rheumatologist I saw told me I didn't have an auto-immune version (twerp, I proved him wrong). My accurate diagnosis of PsA took nine years, from 2002 -2006, I had the umbrella title of unspecified auto-immune inflammatory arthritis, from 1997 - 2000 my GP ignored my increasingly swollen left knee and I lost a further year (2001) being bounced between orthopaedics and rheumatology. I'm nineteen years in and crumbling gently away.

There are around three hundred kinds of auto-immune inflammatory conditions so diagnosis, if one doesn't present with the ideal symptoms in all the right places, can be a lengthy process. DD

stickywicket

I think that's a good plan. You've done all you can for now at least. I say treat the pain, enjoy Christmas, bear in mind there are other autoimmune diseases besides arthritis and keep a diary of what goes wrong when (while trying not to focus all the time on pain – a tough call). I hope things improve for you, Elmbow, but we are always here for support.

Elmbow

Update!

Follow-up appointment with rheumatologist today. Saw a different doctor this time and he was brilliant. First time I've felt listened-to.

He said nerve tests and blood tests were normal but that didn't mean there was nothing wrong.

Since last appointment I have had a few scaly patches of skin. I'd forgotten about them until he asked. Worst patch had gone but I was able to show him one tiny patch on my hand. I thought he'd dismiss it but he didn't; he seemed interested.

He gave me a steroid shot in my behind to see if it helped and wants to see me in 6-8 weeks.

Won't bore you with details but he did seem to be looking at possibility of psoriasis as cause for joint pain. Later I watched a lecture this doctor gave on the internet about psoriasis and psoriatic arthritis. So much of it made sense - it even explains how it could be related to my shoulder pain which I was convinced was an injury.

I'm so glad I got this guy but sadly he wants me to see my original doctor next time (they made a mistake when they booked me in with him!).

Anyway, questions: How long will the steroid shot last? Should I feel improvement immediately? I definitely have more energy but that could just be the sudden mood lift - I thought I was going to be told it was all in my head.

Thanks for listening. s

stickywicket

I'm glad you had a good appointment and it's also good if you feel a bit better whatever the reason.

Steroid jab? As with most things in the wonderful world of arthritis there are no rules. For some they work within 24 hours and for weeks. For others they don't work at all. How's things today?

dreamdaisy

Diagnosis can take time (as we've said) but obviously the scaly skin is a bit of a give-away! Psoriasis comes in a few guises so may not be instantly recognisable to the person who has it. I began the arthritis without the skin trouble but that appeared in the pustular form on my palms and soles in October 2006. The meds I take for the arthritis help to keep my skin clear but, currently being off all of them due to an infection, my skin is playing up, this time in the classic scaly form.

it does make a difference when we find an empathetic doctor but I think the onus is on us to tell them everything whether we think it relevant or not: they are the ones who are more in the know. It always helps us to feel better about things whether they are or not! DD

Elmbow

DD, so true! I just ignored the little scaly skin patches when I first spotted them - they're mostly small and isolated. Sadly I recently upgraded my phone or I could have shown the doctor a photo of the one bigger outbreak I had recently (I was obviously suddenly bothered enough to take a photo!) - if it is psoriasis then that would probably have been more indicative than the few tiny patches of scaly skin I still have.

After a great lift yesterday I had a lot of pain today - and dizziness - but know things can get worse before they get better.

Have great weekends 8)

stickywicket

How are things today, Elmbow?

The extra pain is understandable if you had a busy, stressful day but dizziness? I don't associate that with either arthritis or steroid jabs.

dreamdaisy

It's very easy to think we know what having something means - you think psoriasis and you think The Singing Detective, swathed from head-to-toe in emollient-soaked bandages. It's not like that, far from it. My dad would have the occasional bout of it, just a little patch on either elbow. I don't have a great deal of it even when it flares.

In my experience anything that lifts or cheers us can result in a crash a day or so later as we realise that in fact we're still in pain and still struggling. Other things happen to us despite the fact we have arthritis - the dizziness could be low BP, low blood sugar or just one of those odd things that our bodies can do; not everything is arthritis-related. DD

Elmbow

I felt fine yesterday so totally overdid it - muddy walk in countrysid and pub lunch. This morning my lower back hurts like hell and ankles, elbow and shoulder are so painful and stiff.
Both hands and both feet were numb when I woke up - most unusual. My elbow is the worst though and I know that's not a walking injury!
Think I should take it easy today...

stickywicket

It's a common mistake and we've all done it. It sounds as if the steroid jab might be working but, unfortunately, your muscles are no longer used to such a heavy workout. The elbow could be a walking injury if you either swing your arms or use a walking pole. If you're feeling better just ease yourself into things.

dreamdaisy

Never, ever be seduced by the 'I'm feeling better' moments - on this occasion it's probably the steroid jab - steroids are the ultimate in con artists. They mask the symptoms rather than getting rid of the trouble but we don't believe that because we feel so much 'better'. It sounds as though you really overdid things - no doubt fun at the time, it always is! - but the payback is often not worth the fun that was had. DD