I have bad degeneration in all my joints, including those of my spine, and inflammatory eye disease, yet I am always "fobbed off" by Rheumatologists as "having no systemic disease" and pointless repeats of the above blood tests are ordered over and over again, (which I refuse to agree to having, because my original one was negative and I don't see how my genetic make-up could possibly have changed!) I can't walk anymore and my eyesight is now just down to the top two rows on the eye chart. I get no help. I don't think they want to make any diagnosis, then they don't have to help me. The X-rays show very pronounced degeneration in all joints, but according to the Rheumatologist, all I need is Fentanyl. This doesn't help me at all but anti-inflammatory drugs give me virtually immediate relief. However, taking them causes me very severe indigestion and weight loss. I have no idea how or where I could get any further help. I think the DMARD drugs would probably help me, but they Rheumatologist refuses, because I don't test positive for RA. Any advice would be much appreciated.
Relevance of B27 blood test.: I have bad degeneration... - NRAS
Relevance of B27 blood test.
I know how you feel - not as bad as you are but have positive test results but won't do anything as x-rays and ct scan do not show anything and not swollen when i see them (even though hands are puffy and between thumb and finger is swollen) last appointment in August if nothing showing then will be discharged so have to live with it I suppose
You can be sero negative ( as I am). Still seems to be a bit of a battle unless ra positive!
Could you maybe suggest seronegative inflammatory arthritis to your doc?
Try a different rheumatologist.
Thanks - I would but my penny pinching GP will only send me to the one she has selected, who is less than helpful! They have no money for Medical Services here in Cambridgeshire and I am afraid it is all about dragging the patients to endless clinic appointments, when you have no intention of helping said patients, (because that would cost too much,) but they have to satisfy the Government that they actually do see someone so that they can keep their jobs! When I pointed out to the Rheumatologist I saw, that I had already had a HLA B27 test carried out twice in the past and it had been negative twice and that it was a test of a person's genetic make-up and not likely to change in result - she just was bored, rude and dismissive! That's what we get all the time here in Cambridgeshire and most of us will be glad when the NHS finally expires here - at least if we have to pay we shan't chose any of those who have refused to help us in the last few years!!!
Do you have the classic signs? Morning stiffness lasting more than 30 mins, red and hot swollen joints plus pain upon gentle squeezing? If you do, you need to take photos especially if it goes up and down.
Ultrasound scans and MRIs are better at showing inflammation than x-rays. They can show active synotivitis. Also, do you know the nature of your bone degeneration as Rheumatoid/inflammatory Arthritis looks different to osteoarthritis.
I thought this gene was found in those with ankylosing spondylitis as opposed to RA?
Hi Eiram50, So did I. But the horror of a Doctor at the Princess of Wales Hospital isn't really interested in me or what is wrong with me. They want to keep patients attending dirty little cottage hospitals like that one round here with no facilities, (she claimed she had lost my decent MRI Scans that cost a fortune at Cobalt Scanning at Cheltenham and which show I have severe spinal stenosis, in favour of useless X-rays on a 40 year old X-ray machine, which is all they have at the Princess of Wales Hospital.) They are desperate to waste your time and money to keep you going there to save the jobs of the Out Patient Nurses. The needs of the patients are of no interest to them.
That sounds outrageous. NMH gave some excellent advice on her post in relation to your being able to exercise some choice and control in terms of you being seen elsewhere. I'd chase that up as quickly as possible. You shouldn't have to suffer like this.
In terms of the gene, my understanding is that it is found in people with AS although not everyone with the gene will necessarily go on to develop AS, with the description given, it certainly sounds like it's a strong possibility for you.
I would try to see someone else as quickly as possible- I know from personal experience, the speed that irreversible damage can occur.
I hear your anger and it sounds perfectly justified but please, move swiftly and let's hope you get a proper assessment and treatment soon.
Take care
Marie
With your & your husband's history of bad service at your hospital I would be changing where you attend. Whilst it's correct you have to be referred to a Specialist by your GP you have the right under the NHS constitution in England to choose where & when you see one. Your GP can only advise or recommend where you're seen, not state where. You do this online under the e-Referral service (previously Choose & Book), you don't even have to choose a hospital in your county, any in Suffolk, Beds, Herts or Essex are available to you through the Find & choose hospitals comparison system. There is certainly something going on, if not why would you be prescribed fentanyl, they don't hand them out without good reason. A new pair of eyes should fully examine you, not rely on another Rheumy's finding so should take their own bloods & imaging.
There are options, you don't have to put up with the treatment, or lack of, you've received so far.
Hi nomoreheels and thanks for reply. They wont let us do "Choose and Book" round here as the local Hospital are "horror stories" with very high mistake rates, so no one would go to them if they did! Three of the local hospitals, (The Princess of Wales Hospital at Ely, Doddington Community Hospital and Hinchingbrooke Hospital,) have had no investment in years and offer little in the way of services so they force us to go to them, to bring them in revenue. My husband goes to another G.P. Practice and he is not allowed the "Choose and Book" either. When your Choose & Book letter comes from your G.P., it is already filled in with your G.P.'s choice of one of the failing little local hospitals. I caught a life threatening superbug just having a gynae examination at Doddington Community Hospital earlier this year and nothing would induce me to go back there about anything. Addenbrooke's Hospital messed my eyes up in 1988 when they did a thing called a myelogram to find prolapsed discs. They put radio opaque dye into my spinal canal to X-Ray my spine. It caused the backs of my eyes to haemorrhage and I was sent to Moorfields Eye Hospital in London, where I get world class treatment for my eyes, but have since developed inflammatory disease in my eyes. I see the NHS at it's best at Moorfields and at it's worst at the failing local hospitals - it's been an experience! Regards,
I agree it would be a good idea to go back to your GP and get a different hospital / consultant. It took me to number 3 to get one I had any respect for - though our "treatment" is a review of 7 minutes every 7 months (that includes reading notes, writing up, examining and everything) but at least I have faith in him trying to do his best.
I think you still have a right to insist on changing hospital - you certainly have a right to change GP if necessary or go and see him endlessly complaining of your symptoms....
Watch Fat sick & nearly dead. On netflix
Hi I'm a newbie
Active disease but no treatment as I don't qualify for biologics. Have to wait for damage!
reaction to drugs
Anyone feel they have symptoms that could apply to more than one type of arthritis?
