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Who Do You Believe?

Posted , 6 users are following.

Tricia55
Tricia55

Hi folks, 

After being told some 20 years ago that I had R.A., due to being diagnosed with blood test and the pain I was in at the time, which I have to say has not actually gone away.  I had for several years gone down the road of Homeopathy, it worked for some time but as like everything else it became very costly.....I recently went to see a new G.P., at my local clinic, who told me that I may after all not be suffering from R.A., as you can't really go by the blood test it's not conclusive, if this is the case then why are they still doing it and as I ask....Who do you believe.  Also if I don't have R.A., what the heck have I been suffering from all these years.  This is getting annoying as I said to the doctor the last time I saw her, I feel as though they just pat me on the head and say it'll be fine, well it's not fine.....I can hardly function from day to day.  

Also as I was simply told by another doctor some time ago, "You know you have R.A., your going to be in pain and your just going to have to learn to live with it".  Well what if I don't want to live with it.

Surely there is something that can be done.

0 likes, 24 replies

24 Replies

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  • Jan999
    Jan999 Tricia55

    Posted

    Tricia I have just written a post (in the last 30 minutes) . I thought I had RA but now I probably haven't but waiting for blood test results to determine what it could be. Very frustrating!!!
    • Tricia55
      Tricia55 Jan999

      Posted

      Thank you for your response Matron, It is frustrating when your told one thing from on doctor and another from another doctor.  Hope that makes sense it did in my fuddled brain,.

      I have asked the G.P., I saw to refer me to the Rheumatologist I saw 3.5 years ago, he said he would be in touch and I have heard nothing...When I asked the G.P., why?  She said it was because I had refused to take the medication he was offering me and therefore said there was nothing he could do for me.  It would seem that if you don't follow the line they just try to ignore you.

    • Jan999
      Jan999 Tricia55

      Posted

      I find that disgraceful Tricia. The GP had no right to refuse to refer you.
    • hannaballecter
      hannaballecter Jan999

      Posted

      I think you will find that it was the rheumatologist who refused to see her again for refusing to take the prescribed meds, but again if Tricia had cause for concern for refusing the meds she should have discussed that with the rheumatologist 3.5 years ago. NOT wait 3.5 years and then want help when the RA gets too bad to handle.
    • Tricia55
      Tricia55 hannaballecter

      Posted

      Thank you hannaballecter for your response, yes it was the Rheumatologist who said it, the thing is I did discuss why I didn't want to go down the route of strong meds at the time but he seemed to think I was being awkward.  No I have not waited 3.5 years to ask for help, I have spent all my money on complementary medicine to help my condition which I think did work for some time, it kept me out of a wheel chair for one as I was told at the beginning that was the long term prognosis.  I will not and do not accept that I have to end up in a wheel chair or take medication that could damage  my liver or other organs just to enable me to use my body, there has to be other options available.  Also surely the Rheumatologist should be willing to discuss other options with me to see where we can take his treatment other than meds., I have not waited until it has got too bad to handle, I have for the last 20 years been trying to find other options to cope with this horrid disease.  Also I hadn't actually realised that the Rheumatologist had made this statement until the doctor I spoke to told me he had sent a letter to the practice.  
    • Tricia55
      Tricia55 Jan999

      Posted

      Hello Matron,

      Just to clarify, it was the Rheumatologist who refused to see me as he didn't like the fact that I refused to take the meds he was dolling out.  I only found this out when I asked the doctor about going back to see him.  

    • Jan999
      Jan999 Tricia55

      Posted

      Sorry I misunderstood Tricia even so I think it was unprofessional of him. It's supposed to be patient centred care. All doctors are supposed to work in partnership with their patients.
  • hannaballecter
    hannaballecter Tricia55

    Posted

    I was diagnosed with RA also some 20 years ago, you are right blood tests are not conclusive, but are helpfull in most cases. your Doctor is also right , if yoy have RA you have it for life,  even if it does go into remission, its still there. Maybe I am lucky because I have one of the top rheumatologist consultants who writes for medical journals  and the medical council on RA and he has helped manage my RA very well.  admittedly my meds and my body have reacted and caused problems from time to time but he has always found away around any problem. Your doctor is also right that if you have it learn to live with it and adjust your lifestyle to suit your condition. One thing I will say to your detriment,  if you have not been taking the correct meds for your condition and you have infact had RA for 20 years, thats a long time for RA to have done a lot of damage to your body. Ask to be refered to see a specialist rheumatologist consultant and find out for sure if you have RA.
  • lyy13133
    lyy13133 Tricia55

    Posted

    Plenty can be done. Start with your own body health. Stay off animal fats and sugars and make sure you eat well and often. Lots of fish, veg, fruit, pulses, etc etc and drink pressed fruit drinks without sugars. Drink lots of fresh ginger drinks and take a teaspoon of turmeric in warm water when there is inflammation. On top use omega 3 (bare biology has the best ) and take 3000mg a day alongside vit B and iron. This will all help strengthen the body. Make sure you drink lots of water. So all this helps the system. You have to then decide if you want the western based meds or the eastern based meds. But explore the options. THe problem is there are many types of RA and you need to treat your body to get it well if there are strong drugs going on to it!!!!
  • chrissie72261
    chrissie72261 Tricia55

    Posted

    tricia you should get second opinion and get referred to rheamatolgyist you do havecto live with but you need medication pain management ive had RA since I was 7 but fibromayalgia is similar to RA might be worst asking if yiu have that I have both 90percent of both
    • Tricia55
      Tricia55 chrissie72261

      Posted

      Hello Chrissie, I think perhaps I've answered one of your other posts, thank you for responding to mine, I have asked to be put back on the Rheumatologists list and will take it from there, I guess I have bitten the bullet and realised that yes, I do need some kind of medication but don't really want to go onto something with horrendous side-effects.

      I have also wondered about Fibromayalgia as a friend of mine also has both and therefore I am thinking I maybe in that league.

      I am also starting Acupuncture this coming Wednesday with a doctor who has recently joined my clinic, he has said I should notice a difference after 3 sessions failing that he said it might not work.  

  • chrissie72261
    chrissie72261 Tricia55

    Posted

    trica I shoukd ask your reheaumatologist if you have fibro aswell as RA they do seem to go hand in hand glad you have appt lol good luck
  • lyy13133
    lyy13133 Tricia55

    Posted

    I am worn out with rheumatologists and their 'we know better than you' attitude. The first one I saw didn't really bother to spend more than 10 mins with me because she had sent her trainee to assess me beforehand. Answer: go on the meds. No discussion. Then I had to move areas. I see a second rheumatologists. I tell them I don't want the meds just yet because in 50-70 per cent of cases the inflammatory RA can be transient and I say I would rather wait for the blood results. She is obviously very, very annoyed. She looks down and then suddenly goes "and you may be diabetic. Yes, it would be unfair but that's genetic as well". Then she tells me she can't be definite about the diabetes because the test is unreliable. You can imagine how terrifying this all is. I then am told to go for bloods. She says. "I'll ring you tomorrow with the results". End of. She never rang and I still don't have the results - 3 weeks later. I spent a week having to go to my GP through another set of blood tests and waiting for results that indicated everything was ok. Why would anyone be this cruel? That was st. Mary's hospital at Paddington. Absolute disgrace. And all because I don't want their nuclear meds. And I ask why don't we trust them? Because they really are just NICE gangsters if you ask me. Following guidelines instead of caring. Looking at the computer too much instead of listening. And this is only a fraction of my experience. I think we should get together and start fighting back. We aren't experiments for drug companies, we are here with a disease and we need science to help us - but we need some listening and some compassion as well. 
    • chrissie72261
      chrissie72261 lyy13133

      Posted

      ivy thats disgraceful way to treat a patient some dont have time to do a proper consultant have you rang her secretary for the result if I was you id complain ask to see a different consultant mine runs late but he never rushes you it needs sorting ivy
    • Tricia55
      Tricia55 lyy13133

      Posted

      Hello Ivy, I think it's disgusting that if we decide we don't want to be doped up and not able to function we are thought of as being troublesome.

      Surely that fact is that I have R.A., I wish to function as a normal human being or as normal as normal is......I don't want pills which actually don't take the pain away and make me sleep all day and all night long.   I no longer make plans or make dates for lunch or anything as the chances of making it or null and void.....I find that it all sounds like a great idea at the time but when I actually try getting ready it becomes horrendous and I end up very late.

      I have a very good friend whom I used to meet once a week at 9 o'clock we would spend the morning browsing the shops then have coffee etc.

      We then started meeting at 10 o'clock, now it's down to 11 o'clock for which I keep apologising and feeling usless as it's eating into the one day we can spend together as she works full time, she doesn't complain but I'm sure it must annoy her.

      I agree with you that if you don't agree with the doctors/Rheumatologists, they think your a bit of a pest and don't take you seriously, I told the doctor the last I saw her, which incidently is never the same one at my local clinic, in my last 3 visits I have seen 3 different docs., whereby you have to start at the beginning and all the time your talking they're scanning the computer screen then comes the comment, "oh! I see you suffer from depression", no really, I wonder why that is, it wouldn't be because I don't think your taking me seriously, also pain is a great cause of depression as it drags you down.... Sorry for my outburst but it get my so annoyed.  The last doctor I saw said she apologised that I didn't think I was being taken seriously and said she would phone me back in a couple of days to let me know about the Rheumatologist, guess what....I'm still waiting that was about 2/3 weeks ago.

      Although I have to give her some credit as she has organised for me to have acupuncture which I am starting on Wednesday afternoon.

    • chrissie72261
      chrissie72261 Tricia55

      Posted

      hi tricia ive been on my tablets for years and know dobt fall asleep I just cant sleeep for pain have yiu tried telling your doctor rheumatologist its my body ive decided stopp taking drugs I do suffer with depression but I findvif im talkinh tp friend online and on her I dont feel depressed accupunture ive tried great for my back but for RA it was to.painful and madevit worse like tense machine help my back but aggrovated RA if I did take my tablets id be more depressed and more pain if I was in no pain in remission yes id stop them just see if it camecback have you thought if you stop them want damage will occur if you still have the pain and flsre ups your joints could getvworst its a vicious circle good luck trying
    • Tricia55
      Tricia55 chrissie72261

      Posted

      Hi Chrissie, I guess I just have to bite the bullet and realise that I will need to take some form of medication, as you say if I don't what harm do I do to my joints and everything else that RA effects.

      I guess talking is good help, but I feel that after a while people don't want to constantly listen and I guess also that a lot of my problem has been for the past 20 years I been trying to look at way to cure RA and after spending if not all of my money on what I like to call Complementary Therapies as I think it should all work together & being told by therapists that yes I can cure RA, only to now after all this time come to the realisation that NO!  You can't cure RA you can only try to make it livable in order to live a half decent life. I'm a slow learner lol.

      I have heard that you have to watch what things you use while having RA & that some means of treatment can make it worse, but I will give the Acupuncture a go at least it's on the NHS, as the doctor says I should notice some difference after 3 sessions if not then he will stop as it won't be going to work.

      Having said that I have heard of others who have found it to be a great help and have had private sessions running along with the NHS treatment once a month.  As they say nothing ventured, nothing gained and all that.  

      I find this page helps, just to know that there are others who are in the same boat, you would think I would know you see my mother had severe RA and had her knee cap removed at the time she was too ill and they couldn't give her a replacement, I'm talking about back in the 50's when she had it.  She was house bound for 18 years before she passed.

       

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