Still no further forward with diagnosis

desjumeaux

My Osteo-arthritis
Had another appt with the Dr this week, and ended up in tears during it. I took my hubby along this time.
Dr said he couldnt understand why the pain which started in my neck and shoulders is now in my legs and knees. He asked me what I thought we should do. Well I dont know, I know nothing about medical things.

Anyway, he has now upped my Gabapentin and put me on Tramadol for pain relief and referred me to a rheumatoid consultant in 22 days.

Yesterday I was along at mums (she has dementia) helping her to accommodate the boiler service. I was taking the engineer upstairs when my knee gave way, nearly ended on top of the poor wee man. I now have a swollen knee and a lot of pain. Cant drive as I cant press the clutch.

Is this normal, I get the impression the Dr doesnt know what it is. In the first appointments I thought I was going to be diagnosed and treated but now I dont feel I am any further forward.

Annah

Arthritis and other joint conditions can be a nightmare to diagnose. However, if I were you, I'd ask for a referral to a rheumatologist and if that doesn't work, another rheumatologist until you get an explanation.

I know (from experience) that when you are in so much pain, its hard not to wonder if something serious (ie dangerous) is wrong with you and get pretty scared. But for many of us, it turned out we weren't in any danger despite severe pain. I just wish I'd known that the couple of years I was suffering from mysterious joint pains!

Do you feel your GP is being supportive, or is he reluctant to refer you on? If you don't feel he's doing the best, you could always see another doctor in the same practice or even change practice (that's what I did in the end).

Rheumatologists are a bit of a different kettle of fish. It's difficult if you don't totally trust their judgement and want a second opinion. Just remember that it is perfectly reasonable to ask to see someone else and most specialists worth their salt will understand this. In fact, my mother went for a second opinion for her chronic condition yesterday - he agreed with her current specialist but that's made her feel much more confident that they're doing the very best for her.

Back when I was 'undiagnosed', I can remember being in such severe pain I just lay on my bed and cried. I couldn't believe the NHS didn't pull out all the stops and regard this as an emergency! I couldn't believe the waiting time for a rheumatologist was months and ended up paying to go private. Ultimately, it turned out my condition was not curable, but neither was it dangerous, so I suppose I can (reluctantly) understand why no one rushed to treat me.

I hope the pain relief is helping - I found the gabapentin took a few weeks to reach its maximum effectiveness. I can't really cope with tramadol though - they'd have to scrape me off the ceiling! I found heat pads helpful, but try different things to see what helps and make a mental note of it, as that can sometimes help the rheumatologists diagnose you.

If its any consolation, I don't think your migrating pains are odd because that is exactly what happened to me. I suspect your doctor is just expressing confusion because he isn't sure what is happening to you either. But hopefully, you'll get a diagnosis soon and its much easier dealing with a known enemy, even a fierce one.

valval

if he is sending you to rhumy it might be one of the other arthritis and they can rule this in or out i started being told it was oa but it got worse so ended up at rhummy who did more tests and got meds that help now it never easy as most start the same and it a case of ruleing out stay strong we will be in your pocket take some one with you good luck val

desjumeaux

Thank you so much for the replies, it does help. Annah you gave me such a good description of your experience, which is almost the same as mine and it is really helps me to try to understand what is going on. Valval it is a thought that yes it may help to eliminate something, but it just seems to take forever.

I keep telling myself that this time next year it will all be sorted out (fingers crossed)

dreamdaisy

I think, desjumeaux, that the first step would be to ask your GP for blood tests to either rule out - or rule in - an inflammatory arthritis condition - if the latter proves to be the case then a referral to a rhuematologist would result. I think it generally true that rheumatologists do not usually deal with osteo cases, my consultant deals with my PsA and leaves the OA to my GP and my GP has no input on the PsA.

Arthritic conditions can be very tricky to diagnose and it can take some time. In the meanwhile we do have to struggle on as best we can. Do you use a stick for extra support? They can make a real difference. DD

Annah

I do agree with dreamdaisy that usually, if the blood tests don't indicate an inflammatory arthritis, then it is assumed to be OA and the GP can treat it adequately.

However, for some of us, the situation isn't so straight-forward, particularly for the rarer conditions which may not show up in blood tests or even x-rays, in the early stages. Psoriatic arthritis, for instance, often 'hides' for years. Fibromyalgia often requires a rheumy to diagnose but doesn't show up in any blood tests or scans - it is diagnosed by a doctor pressing 'tender points' and scoring accordingly. Joint hypermobility syndrome (aka Ehlers-Danlos, hypermobile or classical types) can cause osteoarthritis, but it is important that the underlying condition is diagnosed so that a proper treatment plan can be devised. That too is a clinical diagnosis (= opinion of a specialist following manual examination).

And then there's osteoporosis, bone diseases like osteomalacia (adult rickets) and dozens of other forms of joint condition or arthritis, or conditions including so-called "soft tissue rheumatism" that my rheumy specialises in. And there's several conditions that can cause arthritis-like problems like lupus or sarcoidosis, many of which also 'hide' from blood tests. As I'm writing this, more and more conditions that cause joint pains are springing to mind - there must be hundreds!

It wouldn't be reasonable for a GP to know about all of these conditions, although some may be able to diagnose some of these conditions if they have an interest in it. But we often do need rheumatologists or orthopedic specialists to be clear about a diagnosis. Chances are, its OA and then you go back to the GP for your management plan, but I would want to be sure that it was that.

valval

yes we would all love some one to say this is what it is and this will cure it but it is one of those things that takes time keep a pain diary to take with you my first visit was talk bloods and small examination back in 3 months then meds back in 6 months so on and so forth they see how it developing and how much pain you are still in be truthfull as to amount of pain and how much it affecting your life also the exhaustion which i did not realise was part and parcel good luck it will be worth it in end some rhumys also do xrays mine does not they do vary a bit val

teresagrove

Hi

this is a very interesting topic for me. Can I then ask to see a rheummy nurse if I have been diagnosed with OA? I have had blood tests but came back ok.

I have been told by consultant that my cartilage is of such poor quality that it has degenerated in all joints and that they will replace everything that can be replaced.

However, I have arthritis in my one remaining hip, both knees,ankles, wrists, elbows, ankles and thumbs.

RA is in my family and my great grandmother was confined to a wheelchair for many years because of RA.

I am in so much pain and would just like to find out more about the cause of it x

frogmorton

Hi des

l am so sorry you are suffering so much at the moement and feel as though you are not being helped. Am l right that bloods have been done by the GP and they were negative so he decided it was likely to be Osteoarthritis?

Thing is some other types are negative too blood-wise so he is very wise to send you for the opinion of the rheumatologist. This really IS astep forward.

I hope the appointment is very soon for you and the process of getting a diagnosis can begin.

Love

Toni xx

desjumeaux

Thank you, I feel much better from all the responses on here, its like having lots of friends who know what is feels like to support you.

My blood tests came back negative for rheumatism, but there was some issue of a nuclear result being too low, they say it is a 'red herring', which I dont really understand.

At the moment I feel a little light headed from the tablets, but I am sure this will go off once I get used to them. Bit like being drunk.

I also feel a bit more settled as time passes since the Dr appointment.

I only have two weeks to wait before I see the Rheumatism Consultant and I am sure it will pass fairly quickly.

Thank you once again for the help, this time next year I will be supporting others with my experiences.

Annah

Good thing about tablets that make you feel drunk - I've never had a hangover from them!

I hope you get more clarity. A lot of my blood test results are described as 'red herrings'. I think what they mean is that the result isn't so abnormal that it suggests a serious problem, and also that it's only worrying if two of the results are high, at the same time. For instance, rheumatoid factor high plus ESR high might possibly suggest rheumatoid arthritis (not rheumatism - that's just a general term for sore joints). You can get high ANA for reasons other than arthritis, and the same with ESR - doctors have to look at the whole picture.

So it is complicated. I still don't get a lot of it - I tend to be an 'expert' in the stuff related to me, but not everyone else.

Incidentally, the 'nuclear' test (ANA) relates to the nucleus of a cell, not 'nuclear' as in 'nuclear power' - no radiation involved! I was relieved when someone explained that to me.

desjumeaux

Teresajo

I hope you found the replies as helpful as I did, the people on here are so supportive and a lot of them will have gone through what you and I are going through. They really helped me to cope with it.

Best thing is post a new topic and I am sure you will get more responses, your posting may be a little lost in this thread.

Good luck

Haydn12

Hi,
Just to add a little to what others have said. I had 'migrating' pains for years and some doctors decided I was a hypochondriac which meant I didn't get a diagnosis for years until I had a bad flare up (of PsA). So take some comfort that your doctor is referring you. The doctors tried very hard to persuade me even after X rays of my damaged hands that it was not inflammatory arthritis! The lesson I learnt from this is that blood tests do not usually diagnose for PsA so it can be extremely preplexing and worrying. I certainly was as some of my pains struck through my chest. Best of luck and stay patient and persistent.

dreamdaisy

Hello Haydn12, it's lovely to hear from you. PsA is a sero-negative arthritis which is why it can be so hard to diagnose: mine wasn't until my skin obliged with a bout of the P but it changed very little in terms of treatment. It was generally accepted that I had some form of inflammatory arthritis but seeing as how there are so many different variations of that it can take time to settle on the 'proper' label. I began my problems in 1997 but the PsA diagnosis did not come about until October 2006. These things can take time which is exasperating to say the least! DD