Newly diagnosed

dizzylizzy13

I have been given an MRI scan that shows I have severe patellofemoral osteoarthritis of both knees. I am to see a surgeon this month, will I receive surgery and if so what sort? I also have degenerative changes of my ankles and tendonosis.
It is my lower legs that have been giving me the most problems (for years). They stiffen up if I don't move for a few minutes and it is painful to move. I have previously been told I have achillies tendonitis by my GP. I can for instance walk my dog across the fields with no problem and when I get home I sit down for 5 minutes and when I get up I am rooted to the spot and couldn't move if the house was on fire. Then I had to have chemo for breast cancer and found that I felt better on the chemo (probably because they give you steroid for 3 days?) so for the first two weeks I felt great, then on the 3rd when you are supposed to feel better I went down because my legs stiffened up again. I went away to Turkey in October after my treatment had finished and the sun did me no favours at all and found it difficult to walk at all and waddled along. My legs are also swollen (not terribly but it is noticeable). I asked my doctor for some anti inflammatories as the strong painkillers did no good whatsoever. I feel so much better on these (Naproxen 500mcg twice a day) and can now walk much easier. I also had to see a Neurologist because of a close family genetic disease and their test revealed a mild myopothy and mild neuropathy, I haven't got another appointment though until May! I am very confused by it all. Also what exercise would be suitable for me as I cant swim because I cant climb out the pool! I'm ok unless I am required to climb or bend my knees. I also am starting to have back ache and the rheumy said (without examining me) that it was spondylosis but I am wondering if it is because I can't bend my knees that it putting a strain on my back? Any comments would be welcome.

Mumof1

Hi Dizzylizzy, I have no advice I'm afraid as I dont have the same condition as you, but I'm sure there may be others on here who may be able to help xx

stickywicket

Hello and welcome to the forum, dizzylizzie13. First of all, you must bear in mine that we are not medics and can’t give diagnoses. We do, collectively, have a lot of experience of various forms of arthritis but our experience is only that and, for real advice, you need a doc.

You ask what the surgeon will do. Who knows? Only he/she has access to your medical notes and, in any case, different surgeons/hospitals will have different approaches. Just go in cool, calm and collected and tell him/her how things are.

You also mention a rheumatologist but appear to be taking only pain relief and anti-inflammatories. Do you have an auto-immune form of arthritis or was this just a one-off visit to a rheumatologist to determine what sort of arthritis you have?

I’m not familiar with tendonosis/tendonitis but, from what you say about being able to walk the dog but then seizing up, it sounds as if some exercises might help. The GP could refer you to a physio or you could check out AC’s booklet on ‘Exercise’. I sometimes find I need to do exercises to counteract eg a visit to a supermarket. It’s when you least feel like doing them :roll: but they can help. Cycling is also considered good exercise and some swimming pools will have hoists etc.

Sorry, I can’t help on the neurological front.

barbara12

Hello dizzylizzy
And a warm welcome from me
I am sorry you are suffering like this, I do think once you have a proper diagnosis you will feel in a better frame of mind to handle things.
There are lots of us on here that have had a battle to find out what is really going on, me being one of them.
If I was you I would keep a diary of symptoms and pain, and present it at your next appointment.
I do hope you get some help very soon, and please let us know how you get on x

dreamdaisy

Hello, it's nice to meet you and I hope we can help with information, support and encouragement but we cannot diagnose as we are not doctors.

I have OA in both knees and ankles as a redult of the joint damage caused by my auto-immune arthritis. I am currently on diclofenac (an anti-inflammatory) for the Achilles tendonitis in my left heel and I certainly notice if I miss a dose. I hope you also have a stomach protector med if you are regularly taking Nap, that is important. I take all sorts of other stuff too but my mobility is cr*p (even on the better days) I am now reliant on a rollator. No matter, it means I can get out and about and that is what counts! I was seen in August 2011 by an ortho bloke about having at least one knee replacement but I was too young and still have another year or two to wait to be seen again. If you are offered surgery take it. - the improvement it can make to the quality of life is tremendous.

It can take a while for a diagnosis to be made, in my case it was five years before the word arthritis was mentioned - even rheumatology turned me away but I got the last laugh on them! As Barbara said, keeping a diary is a good starting point as that will give a good over-all picture of you over a given time-frame and all information you can offer a doctor is useful. I wish you well. DD

dizzylizzy13

Thank you for your reply. Sorry to hear you are struggling so much. I have been suffering for a number of years, saw a rheumatologist in 2008 and did no tests or investigation, just an examination and could see nothing wrong. Then I saw another one two years later who said I don't know why your legs swell but I think it may be related to your under active thyroid (and then in his follow up letter to my GP said it was unlikely) and again did no tests whatsoever so just put up with it thinking it was my thyroid. Things have got a lot worse since having chemotherapy. My doctor said to me he can't understand why I felt worse in the sun as he would of thought the sun would of helped my arthritis, but it seemed to have the opposite effect.

I had an ANA test and that came back fine and tested for R.A which was also OK. There is autoimmunity in my family as my mother suffered for 40 years with R.A only to be told at the end of her life she never had it and it was possibly SLE and osteoarthritis. Both me and my twin have autoimmune thyroid disease and my sister also has Sjogrens.

dreamdaisy

There are many forms of auto-immune arthritis including sero-negative RA (i.e. where there is not a positive rheumatoid factor), I have a sero-negative which is psoriatic arthritis, PsA. Diagnosis of these things is far from an exact science and it could be that it's time for you to see another rheumatologist because, like all of us, they vary in their opinions: show two rheumies the same set of test results and you could easily get two different diagnoses. Given the family history of things (which sound very familiar on this forum) then surely that's not an unreasonable request. As to not feeling better in the sun why would you? It doesn't help everyone and I am sure there arthritics in all climates. My OA diagnosis was indisputable - bone-on-bone through 3/4 of each joint - kerching!

I ended up being referred to my local orthopaedic department by the physios at our local football team: after four years of an ever-increasing left knee (which my then GP kept saying would sort itself) friends pointed out that if anyone knew about knees the footy physios would, so I made an appointment. They'd never seen anything like it and referred me immediately to the department they thought would help. I lost another year being bounced between ortho and rheumatology (during which time the knee kept growing) and by the time surgery was attempted it was 27" in circumference. Eighteen months after that surgery it was repeated because the swelling came back even though I was then taking sulphasalazine. No matter, that putrid water has long flowed under that rank bridge!

My advice is to keep requesting another referral, start keeping a diary of what helps, hinders, eases, aggravates, tiredness levels etc because this trouble could well have an auto-immune source but, as some of us on here know, tracking that down is sometimes not that easy. As for the orhto side of things I hope that a solution is offered and soon. DD

stickywicket

I'm wondering if your GP, and the rheumatologists whom you've seen, are aware of all the auto-immune stuff in your family. There does seem to be a genetic link in some cases and the fact that your mother was finally deemed to have SLE rather than RA would make no difference to you as both are auto-immune diseases.

My own RA was no worse after I had chemo, though. In fact, I was surprised how good it was while I was on it and only discovered later that some of the meds used to treat auto-immune stuff were first used in chemo, including one I now take but didn't then.

Weather can affect arthritis whatever docs may think. Mine dislikes damp and sometimes wind, has no problems with cold but hates hot sunshine. I feel like a wilting weed in it, drained of energy and different bits swelling.

The diary is a good idea, supplemented with photos of any swollen joints.

dreamdaisy

Hello again dizzy, how are things with you today? DD

dizzylizzy13

in answer to whether my docs are aware of the auto immune stuff in my family, well my gp does and the rheumy did an ana test which was negative. but I seem to recall my sister having a negative one and then a positive test. My problem seems to be imflammation but that could be related to the myopathy they found as I believe you can have imflammatory myopathy. I suppose I will have to take one step at at time and see what the surgeon says about my knees on Wednesday. When I had the chemo the consultant said that having the treatment could strengthen my immune system and said that she had heard of cases of R.A being improved afterwards.

Dreamdaisy - you said why would you feel better in the sun? My doctor said most people feel better in the sun if they have arthritis. I know my husband hates the cold and damp and his arthritis is much better when he is in sunshine, whilst I blow up like a balloon and feel worse.

dreamdaisy

You're almost correct with what I said - I questioned why would you ? The sun works for some but not others as you prove. Your doctor is right but not everyone finds the high pressure (which brings the sun) beneficial. My PsA is not affected by the weather but my OA is the opposite - I dislike the dank, damp days of winter but the cold and sunshine? No problem for me but I loathe the humidity in summer - on the rare days we get a dry heat things are OK. There are no generalities whe it comes to arthritis, we are all different. DD