New rheumatologist appointment today - worrying outcome
I saw a new rheumatologist today. He thought he was seeing me to give a 2nd opinion. He'd obviously done his homework - he'd checked the MRI scans and X-rays done last July - and then spent over an hour examining me. As well as PsA he reckons I have Osteoarthritis in both knees, both hands/wrists and my right foot. They did an MRI of my lower back last July but never did tell me why when I asked. He told me today that it showed I have stenosis of the lower spine. To top it off he told me I've bursitis in both feet.
All that's missing is the plague of locusts!
Comments
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I'm sorry, Jamie. That really sucks and must have come as a shock.
I recall being told I needed new knees immediately. I said I thought they were given for OA not RA. The reply was that when someone had had RA for as long as I had OA would have set in too. And it had. I guess, for me, the shock was mitigated by the prospect of new knees though that did leave all the other joints😯
The only positive thing I can say to you is that, for me, that was over 40 years ago and I'm still enjoying life. I hope you will too.
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Hey,
sorry to hear that Jamie, if it helps I’m under 40 and got told today that my PSA flare might also be gout!! I’m not overweight or drink very often 😕
in it together ❤️
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Hi @stickywicket and @Bea371
Thanks for the responses. Yes it was a bit of a shock and a lot to take in. I said that to the rheumatologist and he said he'd put it in writing to me and my GP. He said I'd need a left knee replacement at some time not too distant. I'm still finding the whole lack of communication thing a bit of an eye opener. It was last July that I had an MRI scan and X-ray and no-one raised this with me before this. I appreciate we're still in a pandemic but it seems a bit ridiculous to get the scans done then not do anything about communicating the results. This consultant said he'd see me again in 4-6 weeks time. Meanwhile he's requested I'm prescribed a stronger version of capsaicin cream - but it turns out there's a shortage of it in the UK. I found a home made recipe for this which I've just made and I'm chilling at present.
On the plus side I called the versus arthritis helpline yesterday afternoon and had a very reassuring and helpful conversation on what I could plan to try to mitigate some of this.
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Hi @Bea371
Thanks for your concern. Back in September 2020 when my knee first flared up - and before PsA was diagnosed - the consultant that drained it tested the sinovial fluid for gout. He gave me a lesson in how to tell - something about the crystals in the fluid being long and sharp if it's gout and that causes it to be sticky so it doesn't flow in the drain syringe. I was quite indignant as my diet is good and my alcohol intake was moderate then. He said that getting gout from rich food and drink was a bit of an urban myth.
I'm quite impressed with the new rheumatologist I saw on Monday. Yesterday I got a letter with appointments for 4 new X-rays on my shoulders, hands and feet next Tuesday. I think I'll be glowing in the dark after this - at least it'll save on my energy bills😀.
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I once saw a new consultant who wanted 27 x-rays. It taught me to stay absolutely still so's they get it right first time. That was about 30 years ago and I still don't glow in the dark😉
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
I'm really beginning to wonder if it's just me or is it the rheumatology department I attend.
I posted the first post above after my first appointment with a new rheumatologist on 14th February. I was really pleased that he spent considerably more time examining me than anyone I'd seen before . However I was taken aback by the catalogue of problems he told me I'm suffering from. Five weeks on I've received no communication regarding this - despite him telling me he'd see me again in 4-6 weeks time. I've tried to get to talk to someone in rheumatology but only get the option of leaving a message. I've also contacted my GP and they have received nothing. I did get a message two weeks ago on my voicemail saying that the letter had been drafted but not signed. I tried again today but to no avail. I then called my GP and they were able to make contact with the rheumatology dept. secretary who said the letter still hasn't been signed. After the issues I had with my first rheumatologist I'm really beginning to wonder if I need change my post code.
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I'm not sure it'd help to change. My experiences, even pre-covid, are that most hospital departments are desperately short staffed and messages don't necessarily get passed on. A kind, thorough, very determined receptionist at my GP surgery finally sorted things out for me. Things must be far worse now.
I hope you and your wife are coping well.
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
My wife and I are doing ok thanks - though she is still testing positive on day 8. I've been doing daily LFTs and they are still negative thankfully.
With regard the delays in communication I've got to say I think it's ineptitude - not pressure. To have a letter sit for 5 weeks not being sent because it was awaiting a signature is really poor. The receptionist at my GP has just called to say the letter has arrived today - but the first available time for a telephone consultation with a GP is 30th March. I suspect if I hadn't chased this nothing would have been done.
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You're right, of course, about ineptitude. But I remember, decades ago, when consultants had just one secretary and, at my rheumatology appointments it was always the same receptionist who, if had reason to ring, in between visits, you invariably spoke to so they knew patients. Now no-one knows anyone, receptionist seems to be a part-time job at the hospital and the same one is rarely seen twice. I suspect it's all about funding and how to pay people less. Which I can understand as there isn't enough money in the system and what is there is often wasted.
I don't have an answer. I'm just glad it turned out well for you. Not, perfect but much better. And I'm very pleased that you and Mrs J are coping well though I hope her LFTs will be clear soon.
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Well day 9 and my wife has a negative LFT so hopefully she'll have freedom tomorrow and I can stop meal deliveries to her bedroom door.
Just back on the subject of performance of medics I had a call this morning from my GP surgery receptionist. The GP has read the letter from the rheumatologist and it turns out my vitamin D levels are low - well they were 5 weeks ago when the rheumatologist took my bloods and wrote the letter - so they are sending out a prescription of high dose vitamin D tablets for me today. This is the second occurrence in 3 months I've had a call (and a prescription) from a receptionist - not a doctor - to say there was a problem with my bloods, last time it was vitamin B12 deficiency probably caused by still being prescribed Omeprazole even though I'd stopped NSAIDs 7 months previously. I've done a Dr. Google search and it appears that some DMARDS and biologics can cause a vitamin D deficiency.
I'm wondering if I'm just going to go through the alphabet of vitamin deficiencies😀.
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I do hope not. I take calcium and vit d (prescribed) all the time but the only problems from my bloods have been low haemoglobin levels. I've taken omeprazole for yonks. NSAIDS did for my stomach before omep arrived on the scene . I took ranitidine for years then either omeprazole or lansoprazole. No ill effects to the best of my knowledge.
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
I'm afraid the detail about Omeprazole and vitamin B12 deficiency is documented - by the NHS and a host of medical publications.
I've also found a number of publications that link DMARDS and biologics to vitamin D deficiency.
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Well there you go @jamieA I've learned something new too!
I thought my low vitamin D was down to lack of sunlight here before April! Wow! Like @stickywicket I have taken lanzop for decades now and not just because of anti-inflams.
You live and learn don't you?
You have done amazingly well btw not to get COVID and I am so glad your wife is better 😊
Take care
Toni xx
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Sorry, Jamie. I didn't mean to imply that I didn't believe you only that we're all different. I've always regarded omep and lansop as lifesavers which, I guess, in my case they are. However, reading your links, I shall be more aware of the potential problems, especially as Mr SW is also on it.
By the way, I forgot to say that's great news that (a)your wife is clear and (b)you have managed to avoid it. So that's nine days of slavery she owes you?😉
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright1 -
Hi @frogmorton and @stickywicket
Well day 10 and my wife has had another negative LFT so she has been released from self-isolation - and I'm still testing negative. I think I might cancel the antibacterial tanker😀.
On the medication front I'm concerned that the solution to one thing appears to cause other issues. As well as the above when I became ill with Atrial Fibrillation despite having no history of heart issues I was told that PsA and it's treatments couldn't cause this. However I've since read various medical publications online that state cardiac issues are common in those with autoimmune diseases and that steroids, chloroquine and methotrexate can cause AF.
'Drug-induced arrhythmias, caused, for example, by corticosteroids, methotrexate, chloroquine, are also observed among AD patients. The most common arrhythmia in most AD presentations is atrial arrhythmia (primarily atrial fibrillation), '
It's beginning to feel a bit like a Whack-a-mole process.
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Interesting info there @jamieA thanks for that i will store it in my memory for future use.
Guess what? My own dearest husband came home with covid too and on day 11 (today) he has finally tested negative!
Like you though I didn't get it at all. Aren't we tougher than we look?!!!!
🏋️♀️
Toni x
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Hi Toni,
That's good news you haven't contracted it - I hope you are both ok. I think the prevalence of covid is higher locally here than at any time previously. My daughter missed a works away day last week for other reasons (luckily) and all 16 staff who attended are now off with covid. My wife tested positive 3 days after being out with her brother and wife for a belated birthday brunch. The day after the brunch her brother and his wife attended a friends grandson's birthday party. Almost half the party attendees went down with covid. I think it's a real mistake by politicians to do away with all restrictions. Hopefully the 4 covid vaccinations we've had are working.
I had a telephone consultation with my GP on Wednesday and she told me my Vit D levels are about half the minimum she'd like them to be. She also told me she's impressed with the thoroughness of my new rheumatologist - the delayed letter actually runs to 4 pages!
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@jamieA and @frogmorton , I'm delighted for both you tough guys, and your respective spouses. I, too, know more people who have had covid in the last month than in the entire pandemic previously and, oddly, of couples, the more vulnerable one has usually sailed through in a week or so while the 'healthy' one has taken much longer and a lot of antibiotics.
Good news about the thorough rheumatologist too.
You could try getting out in today's lovely sunshine for more Vit D but you might freeze to death😉
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright2 -
Jeez..... maybe I shouldn't have asked.
On my telephone consultation with my GP last week - she said it might be easier if she gave me a copy of the new rheumatologists letter than going through it all on the phone. I picked it up today when I was in for blood tests.
I've spent the last couple of hours going through it and googling a whole new language - polyarthralgia, tendinopathy, synovial thickening, metatarsalgia, crepitus, joint effusion, lumbar claudication, nerve root impingement......
I think if I was a horse I'd be burgers by now 😂.
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