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Date: 29.05.2013
From: Jane

Subject: Diagnosis difficulty

Hi, I have been trying to get a diagnosis for RA for some months now. I have had several blood tests and x-rays and they all come back "normal". However, I don't feel "normal" and, although I don't want RA, I can't find any other illness that fits my symptoms so well as RA. If I could describe my symptoms I wonder if anyone could share their experiences with me to add weight to my suspicions. My doctor has run out of ideas.

Firstly, I have stiff joints: mostly my thumb/wrist/finger joints, also toe/lower foot and shoulder. These are not painful just aching and stiff. There is a little swelling but not enough to show up on the x-ray.

My main problem at this stage is the constant feeling of having flu, namely, lethargy with hot and cold/shivery feeling all over. It's driving me nuts because I have to take Neurofen all the time to feel anywhere near normal, although the effects of the drug don't last very long and it worries me taking it all the time.

Am I describing anything like anyone else here has had with their RA experiences? I have made an appointment at the Osteopath because I am not getting anywhere with the doctor, and have to wait at least three weeks in between appointments. I would be very grateful for advice. Thx.
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Date: 29.05.2013
From: bsk

Subject: Re: Diagnosis difficulty

Completely Jane. In fact, the flu feeling was the first sign something was wrong with me, though I didn't realise there was something else going on. Unfortunately for me, or fortunately (depending how you look at things!) I seized up entirely and was admitted to hospital on my first outpatient's appt. I was in very severe pain as well.

You need to get a referral to a rheumatologist. You can have seronegative inflammatory arthritis, which is what I have, where rheumatoid factor doesn't show up in the bloods. I did have a raised CRP and ESR though, which is a fairly good indicator. So far, I've never had any damage show up on either a scan or an x-ray, in spite of obvious swelling in my joints.

I'm afraid the osteopath was useless for me. He didn't twig that I had something more serious than a painful shoulder going on. If it is something inflammatory they won't be able to help.
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Date: 29.05.2013
From: Jane

Subject: Re: Diagnosis difficulty

Thanks for this - very helpful. I am going to pursue the referral but I think I may have to go private as my doctor just doesn't take me seriously. I am using the Osteo because I feel I must do something to positive while I wait, but I agree that long term I need a referral.
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Date: 29.05.2013
From: bsk

Subject: Re: Diagnosis difficulty

Let us know how you get on. Best of luck
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Date: 29.05.2013
From: rhona

Subject: Re: Diagnosis difficulty

Hi Jane, i know how you feel, before i was diagnosed I was told by my doctor that it was a wee touch of rheumatics even although my mother had r/a. I went to see a chiropractor (big mistake) I was in agony when she manipulated my shoulder and i also paid for x-rays. I had to go back to the doctor as i was getting worse and they did some blood tests which showed very high inflammation (not everyone gets this) When i went to the rheumatologist they said i should never have went to a chiropractor as it could have made me worse and they wanted to do their own x-rays so that too was a waste on money.
I would go back and insist that you are referred.
Good luck.
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Date: 29.05.2013
From: bsk

Subject: Re: Diagnosis difficulty

Reminds me Rhona how painful my shoulder was when the osteopath manipulated it. And he didn't have a clue that it wasn't a mechanical problem.
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Date: 30.05.2013
From: Linda

Subject: Re: Diagnosis difficulty

Jane, I would agree with others. My sister swore Osteopaths helped her aches and pains. As it turned out she had Lupus.

My father went to an Osteopath with back pain. He was later diagnosed with bone cancer.

They did help my husband when he had a slipped disc.

If you do have RA, I don't think an Osteopath will do anything for you.
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Date: 30.05.2013
From: Sean

Subject: Re: Diagnosis difficulty

Hi Jane

Both of my relapses from remission have followed symptoms that resembled gastric flu with listlessness and shivers.

You might find this interesting -

http://www.kickas.org/medical/radocs/S1740252206000059.pdf

There is a lot of evidence that many forms of arthritis start with a bacteria trigger - for example psoaratic arthritis has some similarities with Rheumatic fever - my arthritis Ankylosing Spondylitis is a long lived form of Reactive Arthritis where the body overcomes the infection eventually.

The important point of this research is that the bacterial infection can be sub clinical - in other words not serious or that noticeable as such.

A rheumy might stop the joint pain and swelling - Not sure if a rheumatologist deals with infections - but at this stage concern would be that if it was an infection then the body needs to fight it - and many of the drugs that a rheumatologist would prescribe might either damage the gut lining (allowing more exposure to bacteria) or switch off your immune system.
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Date: 30.05.2013
From: Bsk

Subject: Re: Diagnosis difficulty

Hi Sean, how are you doing?

Jane, my Ra wasn't preceded by gastric flu. One thing to bear in mind when reading posts is people have very different experiences and very different responses to treatment.
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Date: 30.05.2013
From: Sean

Subject: Re: Diagnosis difficulty

Hi bsk

I am doing well and have been in good shape recently - got a minor flare up at the moment in my ribs and middle of my back due to stress and too many carbs and sugar - my bugs thrive on a lot of carbs. I am going to try turmeric in my meal with 100% pomegranate juice tonight to disrupt them (klebsiella) and no carbs.

Not just different experiences but different approaches - I have seen consultants and been diagnosed but have not had any treatment.

You are probably right that the best way to quick relief is to visit a rheumatologist. Whether it is the best way at the onset of arthritis is the question here.

Did you see the press reports from a few weeks back -

http://m.guardian.co.uk/society/2013/may/07/antibiotics-cure-back-pain-patients

For me this is the start of a realisation that bacterial proteins and other proteins from food leak from the gut to cause arthritis.

Ironically I have been spending lots of time researching probiotics (lactobacillus) and food based antibiotics (such as herbs and spices) - hence the pomegranate but given judgements of Dr. Sangita it was best not to share.

All disease begins in the gut -

http://gutflora.com/?p=344
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Date: 30.05.2013
From: bsk

Subject: Re: Diagnosis difficulty

Yes I did read that report. Very interesting. I've had so many courses of antibiotics in my life, shame none of them have cured my arthritis.

Sorry to hear you've got a bit of a flare at the moment. I hope it passes soon.
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