One or two of you will probably remember my story, but I've been fighting a diagnosis of RA for almost two years (yes, I know, it goes against the grain). Sore hands and feet. Positive anti ccp. The feet I got sorted out 6 months ago - turned out to be Mortons neuromas. So then I moved onto tackling the hands. I pushed my case with a hand surgeon (fairly assertively) and he agreed to do a tenosynovectomy (there was inflammation in 3 tendon sheaths). He said he would clean out the inflammation and send off a tissue sample for analysis, which he said would "help" the diagnosis.
One general anaesthetic, two weeks off work and a bandaged hand later, i finally got the results today. The lab says that the tissue sample doesn't show up the usual features of RA, and it looks more like "acute infectious synovitis" to them. That's great, but I had hoped for a bit more if that were the result, like culturing the sample to try and identify exactly what has caused the infection, because if that is what it is, I've had it for two years in both hands. And if the right antibiotic can deal with it, I'd quite like it please.
Does anyone have any experience of this sort of thing ? So many of you have a lot of experience in these matters .....
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Cornishrex
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The idea that they actually opened you up and then didn't culture the fluid really sucks! The only thing I can suggest is that you push hard via PALS for the full diagnostic tests. Do you have an appointment with a specialist to discuss these non-results? As perhaps you need to stir things up before hand so he or she knows you mean business?
Hmm. Yes my appt with the specialist is 24 th August. I've only seen the letter from the lab so far and the GP wouldn't discuss it with me other than showing its content to me. I haven't heard of PALS. I'll look into it and do some stirring if I can. I know - I was pretty uncomfortable with the idea of being cut open save for the fact that it might help disprove my diagnosis, so not to culture it once they decide there is an infection ..... Maybe there is more going on the background that is not mentioned in the letter. Thanks for the input
I had them injected with steroids under general back in Jan. The foot surgeon said he wanted to try that approach before actual surgery of cutting them out. Combined with a bespoke sole insert to try and get my bones to lie in the right direction. Id say it has worked 90%. I still can't wear high heel shoes though because of how narrow they are. Surgeon suggests we try one more injection in a few months time to see if that tackles the last 10% (I have three of them across both feet).
Well to be honest Mortons (I've had injections and 2 operations) is usually linked with RA. I've no idea what synovitis is but did get chest pain also RA and something like tenusinavitus in mt hands also RA, which is now in remission so life is normal and pain free. So why do you think its not RA as if it is the risks of complications can be huge if untreated and I speak from experience having RA clotting issues.?
PS I have no insoles and can wear normal shoes the op is very minor and same day discharge, nothing wrong with the bones but eventually the only 'cure' is removal according to my surgeon. The injections here are clever in with a local so no pain then change contents and out with the cortisone. No pain at all but I can't look when they do it after the MRI guidance.
Thanks. Surgeon doesn't want to do the operation if he can avoid it. Both he and the rheumatologist said Mortons has nothing to do with RA. Complete coincidence. Surgeon said Mortons is quite common as you start to get older and it's just a fact of life.
I rather think that as soon as one has been labelled as being "RA" it suddenly becomes a very easy thing for doctors and others to blame everything on it without properly investigating other possibilities. That's why it took over a year to diagnose and treat my Mortons neuromas.
WHy I don t think I have RA - probably would take too long to explain. and I've already been on the various drugs for over a year with no difference.
Hi. I was very interested to read your post as I too have had rheumatoid for the past two years and mainly struggled with my feet but more recently my right wrist and hand to the point where I can no longer grip anything with my right hand not even a pen which makes life very frustrating and limiting. i've had two steroid injections in my wrist in the last six months and my consultant has now refused to do any more for fear of damaging the joint in the long term. His only suggestion is to try a new drug leflunomide on top of sulphasalazine and hydrochloroquine which I am nervous about as I am not convinced it is purely to do with the RA. A recent MR I of my wrist showed acute synovitis and a cyst which my consultant is attributing to the RA. In the meantime no pain relief is helping and I have tried acupuncture which seems to help that day but not for any length of time. I am now at my wits end to know what to do for the best .
I sympathise. RA is a very trendy illness to diagnose right now (as in, doctors are quick to diagnose it nowadays, sometimes too quick). I understand why - the window of opportunity for switching off the disease which is supposed to expire around 12 weeks after it first arises. But I know two people personally who were diagnosed with RA within the last few years and the diagnoses were reversed 1 - 2 years later. If you think one of your ailments is down to something else then push hard for further investigation.
Thanks, I will. Can I ask when you got to see the hand surgeon was that through yourGP or rheumy? I'm not sure how to proceed with my line of enquiry as I'm in the process of being transferred from a private rheumy to an NHS one. Did the procedure of cleaning out the infection actually help? I sincerely hope it has and that you've got the antibiotics you need to clear the infection.
Hi. I've danced a merry dance to be honest. First of all I persuaded my NHS rheumy to authorise an ultrasound of my hands to see if there was any evidence of RA in it, nearly 2 years after my hand pain started. Then at the ultrasound the sonographer said he thought he could see signs of "bone spurs" . So then I went to see my GP and told them what the sonographer had said and asked to be referred to a hand surgeon to talk about it. Which they did. As it turned out, the sonographer didn't put anything at all in his written report about bone spurs and a subsequent x ray (called for by the hand surgeon) showed that there weren't any. Complete red herring. Anyway, I ended up with the hand surgeon largely by chance and partly by trying to get different things out of different people (not sure the rheumy would have agreed to it). I pleaded my case to him to see if he could suggest anything to help (ie hands hurt; don't believe its RA; etc). Which is when he offered to do the operation - he said cleaning out the inflammation would help my function, and that if he took a tissue sample at the same time for analysis, it would "help my diagnosis". I think he was expecting the results to show RA, and so he saw it as a way of backing up the anti ccp result and persuading me to go back onto the drugs.
Hand is getting better. It feels a lot better than it did before (although I have a horrific looking cut going down the palm of my hand which is going to take a while to get better). Im glad I had the op now as I can see how, once the wound is better, my hand will feel normal again (although I was quite horrified in the immediate aftermath).
Now I just have to try to make sure they culture whatever the infection is so that I do in fact get the right antibiotics - if its as simple as that (It never is, I know).
Wow, that's quite a journey you've had so thanks for sharing it. I'm pleased that your perseverance has paid off and that you are recovering from the op. I'm seeing my GP this week so I will certainly be flagging up the non RA argument with him as no other part of me is flaring and absolutely nothing is helping my wrist. It's interesting to note that you are no longer taking meds as this is what I ideally would like to be doing longer term. My mother has RA and has had it for over 50 years and all the problems she has with her health now in her 70s we think are due to long term use of rheumatoid medication so I'm very sceptical!
Thanks. I would advise caution about coming off the drugs. I only came off them because I genuinely believed I didn't have RA, and so I needed to disprove my Rheumie's argument that maybe the drugs were doing something - ie that they were stopping me feel any worse than I already was. Well I came off them in Jan, so I think I've disproved that argument. Coming off the drugs if you really do have RA is whole different conundrum of course, as has been discussed at length on these forums .... my brother in law has RA and copes without medication through: he has a similar to yours vis a vis your mother.
Hard to understand and I feel for you but Mortons can be felt and heard by a good consultant and to be honest both my RA consultant and surgeon said it is down to the RA. But then as with most medical things its a subjective opinion that varies, as always. Mine hurt so much the operation was the only option.
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