misdiagnosis?

bellaboo

Hi everyone, my name is Bella and I'm new to the forums.
I wonder if there's anyone out there in a similar position as me.
I went to see the Rheumy today and to my surprise he discharged me :?
I'm 62 years old and was diagnosed with seronegative inflammatory poly arthritis when I was 41. I was put on arthrotec tablets and painkillers until it was discovered that the tablets had caused multiple duodenal ulcers and consequently gastric reflux disease. So I was not allowed anymore arthrotec (although quite frankly they didn't do much!) or ibuprofen (nsaids)
or any anti-inflammatories (great )I am allowed to take co-codomol plus 20mg of Amitriptyline each night to help me sleep.
Carried on working till I was 54 until I could barely put one foot in front of the other (I should add that all this time I was having 6 monthly visits to the rheumy)
At the age of 55 I had xrays on my hips and spine after a very bad fall in the bath.the xrays showed osteoarthritis in both hips and spine and of course over the last few years this has got much worse.
So, to cut a long story shorter I was originally diagnosed with seronegative inflammatory polyarthritis (by one of the leading rheumatologists in the country) and today told by a different doctor (who works in rheumatology,but is not a consultant and pretty useless) I've just got osteoarthritis in many joints but not seronegative inflammatory polyarthritis :shock:
So what were the carpol tunnel ops on both wrists,the extreme fatigue,the morning stiffness,the swollen hands and feet not to mention the excruciating pain.I'm not sure where I stand on this now.Anyone got any ideas or indeed a similar story.
Thanks for reading.

stickywicket

Hello bellaboo. Welcome to the forum. I really wish I could help but there is stuff in here that I don't understand.

Firstly, if it was thought that you had sero-neg arthritis, I don't understand why you were only given anti-inflammatories. I could be wrong but I thought sero-neg people were given DMARDS like us RAers. You should have been prescribed a stomach protecting med with the anti-inflamms. I know because I have stomach problems too as a result of years of anti-inflamms without protectors.

As I'm sure you know, having an inflammatory arthritis is no guarantee that you won't also get OA and, unfortunately, the only treatment for that is pain relief and exercising to keep the muscles strong though Pain Clinics have a good reputation for helping people to cope.

I'm pretty sure anyone can get carpal tunnel syndrome. As for the fatigue, swelling etc, I honestly don't know. Might a chat with our helplines be useful? AC also produces a booklet on sero-neg arthritis under its other name of spondyloarthritis. Maybe that would help?http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Factsheets#cK45

Colin1

Welcome to the site
I think i would want a chat with the consultant or head of the department.
Take care
Colin

dreamdaisy

Hello bellaboo, it's lovely to meet you and I am pleased you have found us. Please bear in mind that we are not doctors so we cannot give a diagnosis of any sort.

Any form of arthritis will cause stiffness and tiredness, but the swelling may indicate an auto-immune type. Like a few on here I have won the arthritis lottery, my auto-immune version (psoriatic arthritis, untreated for five years, tackled by feeble meds for two years) has led to OA in my knees and ankles and that is a very different kind of pain. Thanks to the meds I take for the PsA the swelling in my joints has eased but they do nothing to tackle the pain of the OA (but then little does). One thing I have learned over my years of Living With Arthritis is that we are at the 'mercy' of doctors' opinions. One doc will say 'It's this!' another will say 'Rubbish! It's not that, it's this.'

As for the carpal tunnel, I today received notification that I have it, it's worse in the right hand than the left, but people without arthritis can also suffer with it. Who knows what's what and why it happens? I think you may need another opinion but I am not a doc. What blood tests have been done for you over the years? I've had regular bloods done for years but that is due to the meds I take. I am going away tomorrow and won't be back 'til next week but I will look out for your name - I hope others can help you more than me. Take care and I wish you well. DD

valval

second opinion would be my choice from what have read on here we often get oa even when we have ia so go see doc and ask for second opinion good luck val

bellaboo

thankyou so much everyone for your replies it is very much appreciated.
stickywicket, unfortunately in 1990 arthrotec was the only drug offered and taking it for years on an unprotected stomach took its toll.
I'm going to see my gp and ask for a second opinion.
The original diagnosis was made by a top consultant at a midlands hospital and the latest by a physician at a hospital in the south of england.
I'm guessing that I will now be referred to orthopaedics for a place on the list for hips to be replaced.I've also had a couple of injections in my left shoulder,got recurring tendonitis in it.my feet are very painful,I have fallen arches and have achilles tendonitis they look deformed and always swelling up.My knees are also on their way out so I'm a bit of a wreck really.
Having said all this I'm still counting my blessings as a dear friend of mine has RA and has already had a couple of ops on her hands and next week is having both sets of knuckles replaced bless her.
sending many thanks and gentle hugs to all you brave souls out there who are suffering and in pain.

amet1

hi i have osteo arthritis carpel tunnel in both hand and multiple joint involvement i dont really see after 2 years of blood tests and investigations for sero neg arthritis that the diagnosis is important for me as far as i gather the treatment may vary but is dependant on the individual, some people can have mild symptoms form ra or severe symptoms but the same can be said about oa.the main difference for me is with a diagnosis of ra there would have been hope of slowing down the condition with dmards with oa there isnt as much that can be done as the damage is already there.pain is pain and can be tiring and depressing in itself.having been on sites for both ra and oa there seems to be quite a competition in who has what, this is the first site ive found where it doesnt matter, what matters IS YOU. and how your arthritis affects you as a person not as a disease.i hope that you get the answers you are looking for but the main thing is for you to look after yourself and if youre not happy find a consultant that you like, ask for a referral back to where you were originally diagnosed if possible as it is important to have a good relationship with your health care provider good luck and best wishes annie

stickywicket

I think you're doing right, bellaboo, as a second opinion is probably the only thing that will give some idea of what was really going on. Unless your GP can help. Sometimes they're very good at sorting stuff out.

You should certainly have been given a stomach protector with the arthrotec. They knew, by 1990, that these meds damage the stomach.

Hey, if you're a wreck, I don't know what that makes me - 2 TKRs and 2 THRs - but at least these are bits that can be replaced.

I hope you get some answers.

barbara12

Hi bellaboo
If I was you I would be getting another opinion, its ok for them to discharge you they are not having the awful pain.
Can you not get in touch with your original consultant,I suppose the treatment would be the same, but just knowing what you are up against can help .
I hope you get the help very soon x