Morning all! say with a smile and bend the knees slightly. That normal had all the villains I knew departing in a hurry!! OK I digress finally got the right time,date and bat channel, and got to see the man, well in this case one of his people. We discussed things in general and the weather, then onto the obvious why am I here questions. Well I answered my fingers are bending out of shape along with my toes and I cant seem to bend my left elbow to well and I hurt all over!! I would like this sorted now! as we being going down this road since 2008, and Ive tried everything you have suggested and prescribed.
As my fingers and toes have started to bend out of shape in the last month or 2 , I would like it stopped as I care for my partner and its making things extremely difficult. it appears the MTX has become ineffective against this, OK he said have you tried, hydroxychloroquine (Plaquenil)
sulfasalazine (Azulfidine) yes,yes, both caused major problems and had to stopped by my GP quiet quickly. he then asked about leflunomide (Arava)
I said I am unsure, but you have the records in front of you it should show if I have used it or not, Ah he replies the gp could of proscribed it!! ah I said I dont know, but pretty sure I would remember it if it had worked!
I decided to add what my GP had said to me last week, when I was with the boss lady, I said the Rheumy nurse talked about biological , and my doctor had gone finally, about time!.
With this little ace card on the table, he went of to Dr Mo and came back 5 minutes later saying OK Craig we are going to ask for an urgent MRI scan of your hands!! OK said I why? he replied to see if its the right type of inflammation,other wise the drugs wont work! For a moment I thought I was listening to a British rail tannoy announcement saying it was the wrong type of snow for the snow ploughs to clear!!!
Us oldies on here hopefully will get the comparison, so I am now back home awaiting appointment for the MRI which hopefully show the right inflammation .
thats it for now folks hope it made some of you chuckle.
warmest Craig
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So you Brits have the wrong type of snow for the snow plough? Hahaha...sounds just as stupid when Ice bombs crashed through car windshields on the Port Mann bridge & Alex Frasier bridge. Patrick Livolsi, assistant deputy minister, claimed vehicles were struck by falling ice & snow on these bridges but he could not find the source of the snow & ice........fools
Nope Suzannedale! Wrong type of snow on the rail tracks - the wheels just won't turn on it and the train revs like mad and goes nowhere! Not unlike Craig's rheumy team by the sounds of it - good luck Craig with finding the right type of inflammation - I think? 🙃
Currently living in France and thinking of returning to UK, this sort of thing really puts me off. What has happened to the NHS? It seems as though they really do not care about people whose bodies are becoming disfigured by RA and are in constant pain. Hope you get your scan soon and that you are able to go on to biologics.
Thanks. My problem is that I'm not really that happy where I am - small rural village with no public transport or shops, it is also too quiet for me (no real friends and live alone). I also have a very large garden which was great when I arrived, but I'm now 61 and find that I can't do everything that I could do just last year. Maybe I should concentrate my search for a new home nearer a larger town/city in France. Think I'm going through a bit of a depressive faze!
Yes Kay do have a search around in France......look online at property & then look at UK sites & compare prives. I'm on my own too & have been looking to downsize for the last two years.
I live in central England & new build smaller houses are more expensive than my much larger 10 year old house. Property prices in UK are completely off the scale.....plus public transport is getting very scarce & unreliable.
I still drive, but the day may come when I can't so transport & at least a small "corner shop" are very important, but here they are building like crazy, but not including any shops or bus routes & certainly no GP practices. Average wait here for a non urgent GP appointment is at least two weeks.
Of course in other parts of UK conditions may be easier.
Good Luck whatever you decide to do...but try to come over for a couple of weeks,stay in an area you think you might like to move to & really delve into what the real situation would be for you.
Hi Kay, the NHS is in a bit of a pickle, due to constant under funding by successive governments , it will always be the case. it cant vote so like anyone who cant vote or have enough voting power, will be constantly picked apart by people looking to make a quick buck.
Re your problem its hard, maybe you could offer a room in return for company/gardening duties. You pick who stays with you, they get accommodation and you get company. It being tried in several country's. If I remember each village/town have mayor/prefect and local council. it maybe they have a list of people requiring accommodation.
You may say NON,NON,NON!! Its just an idea, it may help with feeling a bit down because you cant do the things you used to do. I know that feeling all to well, I am now shore based having lived on my boat for several years, and I miss it terrible. But even I know I couldn't mange the physical stuff doh.
The clinical staff in the NHS really do care...but the grey suits appear to just plod on requiring more & more forms to be filled in, refusing to listen to those at the coal face & despite free advice offered by successful business folk who can see how a lot of the problems could be dealt with.....they continue to ask the Government to throw money into the NHS kitty....only to spend it in exactly the same way that has caused the problems it is now experiencing.
To throw in my two penny's worth...I have a friend living in Evian in France who is very poorly....herGP visits her weekly to administer an injection & actually made a house call at 3am! I think I'm right in saying that 99% would not happen in the UK!
Last year I called out an emergency doctor for a sick friend.....his English was so bad we ended up saying "thank you & goodbye" & I drove her to A&E!
No matter who wins on 8 June...I don't see things improving anytime soon. .......good medical attention is available, but at huge expense!
France may have its problems ....but I think from my limited experience, their health care seems to win over the NHS.
Thanks. I will try to get my positive thoughts back together and look to stay in France. I could stay where I am, but think I need more contact with positive.
I'm a bit on the fence on what to advise Kay, thinking of the future which nobody can predict. From my side I wish we'd have been able to stay in Spain having now experienced the changes in the NHS as Rheumatology isn't anywhere near as well run where I live now, neither is it as forward thinking here as it was there. I even considered, as we'd retained Residencia & my h was still paying into the system at that time, of flying over there every 3 months to remain with my Consultant, that went to the dogs when Jet 2 pulled out of their contract with our local airport! On the other hand we weren't to know my h would need the services of Cardiology, which I have to say has been exceptional here. Of course we can't have predicted this & his treatment may have been just as good over there but my/our support system has been important here, which makes a difference in those sorts of situations. But we're talking Rheumatology.... if you receive good treatment in France I'd be considering a move to the outskirts of a larger town with a more manageable sized garden nearer to larger shops & services & of course a hospital with a Rheumatology dept. That is unless you feel you're approaching the time when family support would be higher on your list of priorities. It's that as much as anything which concerns me, is it because you live in a rural area & you don't have the opportunities to make connections with people? If that's the case then maybe there would be more chances to do so in a more highly populated area. If not then maybe doing your research (or ask here) for a good teaching hospital Rheumatology dept & consider moving back here. That raises another question, how is the property situation where you're currently living or where you'd prefer to settle if you were to return to the UK? You also need to know how deep you'd need to dip into your savings (or not) moving from a rural area into a more urban situation, or, if you'd prefer, to move back to the UK. It's a difficult one. What I'd do (because I always do in situations such as this!) is draw up a Pro's & Con's list, maybe trying this would make your needs/wants a little clearer?
I hope my thoughts haven't confused you even more. Whichever decision you make I hope it's the right one for you. x
Farcical! If it wasn't so serious it'd be funny. I really hope the MRI shows you have the right kind of inflammation for them Craig & you pass the requirements to start anti-TNFs/Biologics, (hope it's not OA either). Yours is an excellent example of how seeing just the one Rheumy (no Registrars) works better for us. I'm 99.9% sure you wouldn't be finding yourself in this frustrating, uncontrolled, bent fingers/toes position now if you'd not been seen by so many different med profs. Grrr, rant on your behalf over. 😡
Fingers crossed (only slightly in my case, my ties are already crossed in case you need more good luck) that you have the right sort of inflammation! I wonder how many sorts of inflammation there are?
(Could be a cue for a poem, Don)
The right type of inflammation? That's a new one on me. I think they will find the right type of something, from what you've said I think biologics are on the cards. I hope I'm right.
But honestly, couldn't he just have explained what he meant more clearly? Oh well.
I just hope that you can have an Ultra sound done quickly. Last year I saw the consultant who thought I should have one. Six weeks later I had the scan by which time I was in a lot less pain. The operator said I had synovitis on the scan. Four weeks later I had a letter from the consultant saying this and asking if I would like a steroid injection!!
After this we have an agreement that if I think it's inflammation I just put up my oral steroids for a week!
You couldn't make it up, could you? The right type of inflammation? Let us hope it is the right type and not some naughty wrong type and you actually get some useful treatment which will help. Hugs
Did he mean the correct 'level' of inflammation rather than type?
tbh, I'm intrigued because I wonder if there are types of inflammation that some people have that are rarely reflected in CRP, ESR, ferritin levels etc. (sometimes reported here by people).
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