Do you feel that your hospital helps you to understan... - NRAS
Do you feel that your hospital helps you to understand your RA?
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My hospital has failed to give me any advice. I felt so alone untill I found NRAS.
I was sent away after diagnosis as if I had just been told I had the flu, in fact I returned to my GP after about 3 weeks of no improvement from the methotrexate and other meds and asked how long it would be as I couldnt cope much longer. It was only then that my GP said you need to learn to cope with it because you have it for life!!
The consultant I saw looked at x rays and said " yes, RA" he didnt even look at me, he asked me do I get much pain, I said yes, and he said ok methotrexate at 10mg once a week, here is a booklet which tells you about your treatment. I'll give you an injection now. I thought that was the methotrexate, but obviously it was a depo injection. I was told to make another appt for 4 months time, and that was it. I found him quite rude, and arrogant, at one time he left the room to speak to the next patient, without even telling me. Not a very good introduction to RA My mother had RA, so I did know it was a chronic illness and that it would be lifelong.
After seeing my consultant I knew very little. My first meeting with the Rheumy nurse helped. She gave me a lot to read and was very helpful. Unfortunately she went on long term sick shortly afterwards and wasn't replaced (although I believe they have just got a new one -12 months later!!) Most of what I know has come from my own research and the NRAS forum.
Like Georgia, my mother had RA too, so I knew some of what that entailed, but her treatment was some time ago! My diagnosis took rather a long time.
I was on a walking holiday with my husband and after one day of going up and down cliff paths (!!) I developed sharp pains in shoulder, elbow, then all over. After resting it got a bit better and returning, my GP dismissed it as 'wear and tear'. But it didnt go away and I got referred to the local specialist hospital. Even then I didnt have a clear diagnosis for some time, and my computer scores didnt qualify me for a clinical trial of what I think was Embrol. So I went through the statutory elimination of medication which didnt work. This was a nightmare because I'd just got my PhD and was off to do research in France. But I wasnt able to get to the interviews I'd planned, and my colleagues thought I was skiving. I lost a lot of the good will I'd built up over the years and was too tired to make a proper contribution to publications etc. But I struggled on with work for another 8 years, taking what I could in the form of part time teaching and research projects with the help of assistants. It wasnt very satisfying, and quite frustrating to have to cancel meetings all the time.
I still find that because you cant see anything obvious with RA people arent so helpful as they would be if you'd broken a leg. I put on quite a lot of weight, so then started to feel that people were judging me for that - it explained my loss of mobility etc. I've lost quite a lot of that now, which does help.
But those delays, that uncertainty and lack of real understanding has made a difference. So I'm sure it helps to share these experiences.
I spent a couple of years going to one consultant who was extremely rude and basically said there was nothing wrong with me and he could do nothing more for me. I had spent most of my life barely ever taking a parecetamol never mind going to the doctors so it was unlikely I was making it up. I left the hospital in tears and vowed I wouldn't go back to him. I returned to my GP who referred me to another hospital and within weeks I got a diagnosis of 'inflamatory arthritis' so it still didn't sink in that I had RA. At first i was relieved that I had a diagnosis and that i wasn';t imagining it but 6 months down the line when I realised this was for life and there wasn't a magic cure I got quite depressed. I have found the RA nurse much more understanding than the consultant. In general I have had very little infoand I have had to do all my own research.
hi same happened to me exactly!!, my name is alison were do you live?
I was more or less the same, firstly they thought MS, then a nerve problem, as no Rheumatoid factor showing in bloods, dismissed. Then had major flare up on follow up appointment, and ESRCRP were very high, and other indicators. Told "oh yes its Seronegative RA" went back to work told HR, who said "so you don't have anything wrong then!" Cathy my RA nurse gave me some leaflets to give work.
When I first went to see my hospital they were great but my doctor retired and I now have a new one who just goes through the motions, how am I etc. My condition has got worse and they have kept me on the same pills I feel they could do more.
I think I have been really very lucky, fairly snappy diagnosis (within 3months), I recieved treatment straight away and lots of info and support. My Consultant is fab (stand-ins and locums, not so much use) and my RA Nurse is great, very understanding and helpful. I ask questions galore and often cause hassle by doing it but at the end of the day I am entitled to know what is happening to me! When they leave the room I use the opportunity to take a quick squizz at my notes 
I have the phone numbers of all the 'right people' to call if I need them. My GP has also been outstanding through all of it too and continues to be so. I think my age (29) at the time helped push things along for me as well, I doubt if I had been older and with grown up children they'd have acted so swiftly.
It's early days for me, but so far I think my hospital has been brilliant. The doctor is great, answers all my questions and makes sure I understand. Nurse also seems fine. They book the next appointment before I leave so I always have a date in the diary, and I have phone numbers to call if need something between appointments. Given that I live in east London which is a poor area, and NHS services are very stretched here, I have been really impressed. And unlike emandedmum I'm definitely not young, so can't be my age! But maybe it's age of consultant as she's v. v. young, v energetic and v determined. I just hope she stays in this hospital and isn't tempted off to somewhere posher. I tend to think tho' that you do have to ask or you won't get. Doctor's aren't telepathic so I do try to make it clear how I feel and what I think I would like. I've been keeping a diary so I can quickly tell her what's happened since last app't.
I think i must be very lucky, i was diagnosed within 3 months started on medication straight away. My consultant is very supportive and he has called me himself when i have left a message. I am 22 and this has completely changed my life but i have had excellent treatment so far i am always being seen by physios and OTs. My condition is not well managed at the moment and im back in hspital later today for another steroid infusion. It is so nice to hear other people's experiences as i have felt very alone at times.
Hi Kelly, I know what you mean by feeling alone with RA as I felt the same way, I still do at times, but being on here chatting to others really helps me cope.
I had my first symptoms at 28 but was never actually diagnosed until 12mths later. Although I have a very good Rheumy and RA nurse I think being pregnant and having it through pregnancy just confused
everyone.
Hope the steroid drip helps you, they helped me at first when mine was not being controlled.
Good luck
mand xx
Hi everyone, im totally new to this, the RA and this site!! But i just thought id say hello. My doctor missed the rheumatoid indications on my blood tests 3 times, so by the time i was sent to a specialist, 2 months ago, i had no idea what RA was. The consultant was brilliant though and made sure i was aware of everything that was going on and although i havent seen her since i have had almost weekly check-ups with my nurse, who works with the consultant. I cant fault the care i have recieved, and although the fact i have RA and its seriousness hasnt sunk in, i know that when it does i'll have a brilliant team to count on. I hope others are as lucky as ive been.
Maxine xx
Hi,
I didn't get diagnosed at a hospital but was sent for tests and then to see a rheumy by my GP. I guess things work differently here in France.
My rheumy was ok he gave me mtx and worried when I was coughing all the time so sent me to see an allergist..He dismissed my wheezing as simple allergies. I was given several anti-inflams as well as the mtx, as they did nothing except give me various side effects I kept changing.
I decided to stop taking mtx, largely due to the side effects and the fact that I wanted to have children but also as I wanted to try another way less harmful to my health than mtx. My rheumy agreed, the only thing is that every time I see him now he asks if I'm pregnant, and if my bf is capable of having children!
I am going to see another rheumy, a third one, to see what he suggests as mine has now become rather lax and has stopped listening to me.
Fingers crossed for the appointment which is next week!
xx
My Rheumy and hospital Warwick have been fantastic, although the first diagnosis was viral inflamitary and it should be gone in 6 months, it didn't and it was now Sero-negative RA. I ha MTX tablets lost my hair, changed to injections 2 yrs later full head of hair, lucky to try anti TNF as sulph didn't work either. The nurses are always there for you and will answer any questions they also oversee general ups and downs of meds. They introduced me to NRAS and will give me a call if they think I've disappeared of their radar.
I'm seeing my rheumy this week and i always look forward to the appointments.
Tx
I have been seeing the same rheumy. consultant for RA since about 1993 when I was first diagnosed. He does explain more nowadays than he did in the past (probably a sign of the times) but it would be helpful to have some leaflets (or etc.) on the various conditions which arise with RA., they are not available within the rheumatology department. I have found them in the physio (and etc.) area which is away from the consultation area.
I also find very helpful the rheumy. nurse I have been seeing. I have been given a helpline telephone number which I have used on a couple of occasions and the rheumy. nurse has called me back.
I also was told about the pre-payment certificate from my doctors receptionist - not anyone in the rheumy department.
i got a leaflet from the hospital with basic information about RA.ive learned more from the internet and my docs.the rheumatoid arthritis warriors on facebook is very informative
I got diagnosed mainly by accident. I had originally gone with an ear problem which they thought was a pituatry tumour. Scan was negative but showed patches which they thought was M.S. Spent 7 years with this hanging over me then eventually tested for other Auto Immune conditions and came back Rhuematoid Factor Positive. Saw Consultant very briefly have been treated by Registrar and Specialist Nurse. Not been reviewed since January keep ringing for appointment but have been told it may be next January. Have really suffered with depression and fatigue these past few months but no one is interested. You ring the helpline and they say they will get back to you and thenif you miss their call they can be quite snooty. Don't check CRP and ESR evry month I was originally told they had stopped but then got told they got checked evry 2-3 months mine not done since May. My G.P said when I enquired re Breast reduction that a letter from the Rhuemmy would help got told they could not commit one way or the other- Not very helpful
After being dismissed by G P time after time, when I was referred to the hospital, rhuematology, it was life being given a life raft. I have to say I cannot thank them enough, the continued care, choices and information I have been given has been amazing.
I couldn't ask for better care. From my GP to my consultant and specialist nurse, everyone has been brilliant. I'm kept fully informed, get copies of letters and reports, given lots of leaflets and can ask as many questions as I like. I have access to a physio and occupational therapist. Even my phlebotamist is ready to explain my bloods test results. I have been diagnosed for 9 months and feel blessed to have such caring and dedicated people looking after me.
I too have had fantastic care for over twenty years from the whole team at Hereford Hospital. It does help that I'm an ex-nurse and know my way round the system and understand the way my body and the drugs work but it's always very different when a disease affects you rather than others. I think it helps a lot if you do some research from well - informed sites like Arthritis Research and NRAS and ignore most of the rubbish on the internet and a lot of the very personal experiences - because they are so individual to that person. Ask loads of questions of your team, get copies of letters, talk to anyone you know if they have the same condition and stay positive if you can as this disease is definitely exacerbated by depression and stress ( though it's by no means caused by either of these). My disease has been severe and I've had every drug known to rheumatology so far over the years but it is manageable so good luck to everyone either newly diagnosed or old timers!
I was the first to comment above complaing on how poorly my hospital explained my diagnosis to me!
However over two years in and Im now on the RA patients course so Im acctually finally understanding my RA fully thanks to the hospital I complained about but I must say this is good but a little to late I think paitent should be offered this course within the first few months to help them cope!
My GP and consultant are both very good, HOWEVER - I think I come over quite cheerful and positive when I see them! Hence they tend to think I am coping OK. I try to say things like 'this is a good day' but sometimes I
Wish they could see me when I am crying alone.
Have now discovered that another GP in my surgery specialises in RA - this is a huge bonus and I go to her whenever my health problems are RA related.
Gp sent me for an xray, then sent me to specialist who said i had RA and sent me away with leaflets to read!
Went for rheumy appointment and givdn methotrexate to take, this didnt work fof me so transferred to leflunomide.
Feel like i have no support and no-one has really explained the ins and outs of it all. Am made to feel as i have it i should know all about it!!!
