moderate degeneration ??

louj

Hello- I am 44 yrs old and have no diagnosis but have finally started to get answers to my long term pain and stiffness. I saw a rheumatologist in March- though my bloods were normal as they always are, he did an xray which clearly showed cartilidge loss in my hips and knee. Then went for bloods again for ESR and CP- came back normal. Then had MRI. It is May and had no diagnsis yet but I called the secretary who said that the MRI showed moderate degeneration of hip (s?) and I was being refered to ortheopedic surgeon. Felt worried by this. Does anyone have a similar story? I have read up and think that I have RA sero negative (my 71 yr dad is treated for this) but there is no diagnosis of RA yet. I also have noticed a change in lasy year of other parts of my body. LOTS of clicking nd locking in my wrists ,ankles, and shoulders. How bad is moderate degeneration?Any one else got symptoms like these? What is it likely to be????

tillytop

Hello Louj and welcome to the forum.

I am sorry you have been struggling for so long with no diagnosis but hopefully the current ongoing investigations will give you some answers. Arthritis of all types can be notoriously difficult to diagnose. Obviously I am not a doctor but my first thoughts are that the reason for the orthopaedic referral is because the joint degeneration showing on the MRI of your hips and knees is an Osteoarthritis (OA) type degeneration, rather than the kind of joint degeneration seen with RA. My understanding is that they are quite different. The other thing I would say is that, because RA often starts in the smaller joints (eg hands, wrists and feet) if a rheumatologist suspects inflammatory arthritis, in my experience they tend to start with x-rays or scans of these joints, because that is where I think they would expect RA damage to show first. OA can affect multiple joints, as can RA, and the pattern of joint involvement (and other symptoms) is one of the things which can help the specialists to determine which you have. Of course it is possible to have both RA, or other inflammatory arthritis, along with OA which can make diagnosis even more complicated. Blood results do not always help because, as I and lots of others here have found, they do not always seem to reflect what is actually going on. The only thing I can suggest at this point, is to make sure that you tell the orthopaedic consultant about your family history of RA and about the problems in your other joints when you see him, and see what he says. I would hope that, if he has concerns about the possiblilty of RA, he would then refer you back to the rheumatologist.

Between us on here we have many different types of arthritis - and in some cases more than one type - and I know you will get some more replies to your post soon.

Thinking of you.

Tillyxxx

dreamdaisy

How to define moderate degeneration? Gawd knows. One man's moderate is another's trifling is yet another's disastrous. You certainly sound to me as though you are more in the OA camp rather than the auto-immune variety, and a referral to orthopaedics is the usual process. Cartiledge loss is indicative of OA, as is decreasing joint space - I have this in my knees, it's bone-on-bone through both of them, and it's beginning in my ankles. The clicking etc you describe is ligaments sliding over the joints (I think) and everyone - arthritic or not - can have clicky joints. The locking though is something else and I reckon that is something for the orthopaedic chap to think about, or perhaps your GP may have an answer.

This referral is nothing to worry about: if surgery is determined to be on the cards at some point it is worth remembering that surgery is designed to help and that in OA it can be a very effective treatment. I wish you well. DD

louj

Thank you both for posting.
I just find it strange that it may be OA - why? my dad has RA and my mum has a non specific conective tissue disease ( another immune thing) so maybe mix them up and thats my hips!
The worst thing is not knowing any answers and I hope the letter arrives soon to tell me the results. You write as if thats all the rheumotoligist will do - but he hasnt even told me whats up yet! I shall call the rheumotology dept and ask for a diagnosis. There must be one if I am off to see surgeon?? I can still walk and do what I need to do so I wont be chasing surgery yet. At least if someone tels me I have arthritis then I can feel better about taking ibruprofen every day.

dreamdaisy

I can't speak for tilly but I did my best to reply in a way that would offer you some explanation for what is happening, but please remember I am not a doctor, I don't know you, I have no information about your medical history and I cannot advise.

I am now beginning my sixteenth year of my life with arthritis, I was referred (in the year 2000) to a rheumatologist by the physios of my local football team - yup, I was that desperate that I thought they might be able to help as they worked with footballers and might know a little about knee joints. They were the first people to say 'Yikes, this is wrong, your knee shouldn't be this size!' but even then it took a great deal of time for me to be taken seriously by rheumatology, and I had to go via orthopaedics for an operation to remove all the soldified swelling.

Diagnosing an auto-immune arthriits is not necessarily straightforward. I was lucky, in that although I never had a positive RA, I had sky-high ESR and CRP markers so for a while I took the meds (which did little to help matters) and lived under the 'flag of convenience' of having inflammatory arthritis. Although I had a history of eczema and asthma (from my mum's side of things) I was not aware that my dad was prone to small episodes of psoriasis. Luckily my skin duly obliged with a lovely bout of that and at long last I had a 'proper' label, PsA. That was granted in October 2006 and I have not looked back.

We are all so different in how these things begin, in how they develop and at what rate, in how they present and, in the early days, it can be very hard to tell what is what. It is not, however, an easy time for you, I do appreciate that. DD

louj

Not a good colour- try again !!!!

:!: Well thank you Daisydream-I feel curious and thoughtful/anxious more than anythig else. I have had daily pain and fatigue for so long that thats OK. The limping has been noticed by others quite drastically i last 2 years. So pleasesd that the xray and bloods have finally showed something - I have been visiting drs for for over 15 yrs! I have been to dermatology and podiatrist but only when they decided x ray did the degeneration show.I also have eczaema and have had since birth. It flares up badly every so often.
I think the baseline is -what can I do to help myself and do I need to take additional medication? I am clearer about my needs and will ask DR when I finally get an appointment to discuss the MRI.
Thanks for your support,
x

frogmorton

Hi louj

You are in limbo at the mo aren't you with no-one explaining what the Xray( sorry l think it might have been an MRI :oops: ) results mean. I took it that moderate was worse than mild, but not as bad as severe.

In your shoes l would want to see 'someone' to discuss the results of that Xray.

As you said then what else can you/they do? In terms of physio/medication/ exercise etc.

I totally undertsand how you feel though. 15 years is a long time to wait for a diagnosis, but you are really close now.

Love

Toni xxx

Ps a lot of the colours are too light for us to read l agree so tend to stick to darker colours too

Airwave!

Morning louj,
Our story is a common one, if you have OA then you probably won't get a definite diagnosis, just 'degeneration', you are in between the specialities of orthopedics and rheumatology(that is you don't need an immediate operation and don't need anti-inflamatories) and get sent back to your GP for some painkillers despite additional things happening to you over time, well thats what happens here, its a well worn path.

Be careful about diagnosing yourself, OA in itself can be bad enough to fool you into thinking the world is falling to bits, it's just arther biting! Learning to live with pain, frustration, difficult emotional thoughts and fatigue are all part of arther, life can still be good.

arther can become a lot less than 'the elephant in the room' more like a mouse that growls! It all down to us and how we see life. Keep smiling.

8) It's a smile, honest!

frogmorton

Airwave! wrote:

Morning louj,
Our story is a common one, if you have OA then you probably won't get a definite diagnosis, just 'degeneration', you are in between the specialities of orthopedics and rheumatology(that is you don't need an immediate operation and don't need anti-inflamatories) and get sent back to your GP for some painkillers despite additional things happening to you over time, well thats what happens here, its a well worn path.



arther can become a lot less than 'the elephant in the room' more like a mouse that growls! It all down to us and how we see life. Keep smiling.

8) It's a smile, honest!

sorry for the hijack Louj

BUT fabulous to see you Airwave

love

Toni xxx