Should I try for a diagnosis?

Dorothy

Hi,

Pre-Covid, my then GP thought I might have PSA. Eventually, that was ruled out, and rheumatologist could find nothing wrong apart from 'normal' levels of OA in my hands and feet, which he said 'shouldn't be severe enough' to bother me and my GP lost interest. But I've still got the pain.

Moved last month so now have a new GP surgery. I had a phone consult with one GP for something else and she was asking general questions about my health and then asked if I've ever been tested for Sjogren's syndrome. When I said I hadn't, she said there was no point diagnosing me as there's no cure, just treatment with eyedrops, creams, painkillers etc, which I could do without a diagnosis. I had to see a different GP at the same surgery for an in-person checkup the following week, and she picked up on the first GPs notes about Sjogren's and said if that was what it was, I needed a diagnosis, and that she wanted to put me forward for tests.

I've got mixed feelings - partly, I would like to know what's causing my symptoms so I know if I can do anything to make them better or if I just have to live with them. And it would be helpful to know what is causing my problems, to help plan for the future (I'm 46, so quite a bit of working life left in me, and I'm often struggling - so a diagnosis might help me know if I need to change jobs, or enable me to make changes to my current work that would help me keep going)

But on the other hand, I feel bad about taking up NHS resources if they can't 'fix' me and also, at the moment, it seems daft to go for tests that aren't strictly needed. My last GP told me I just needed to 'get used to getting older'. But I see people in their 60s who are more agile than I am, so I feel 46 is a bit young to be written off as a creaky old crock!

Is there any advantage to getting a diagnosis for Sjogren's (if this is what it is)?

Lilymary

If they're offering a diagnosis, go for it, even if it's not treatable. Don't feel guilty. If there's something wrong with you, that's what the NHS is for. If it's not Sjorgrens syndrome, they can start investigating whether it's something else affecting you, that may be treatable.

The more we know about what our bodies are doing, the better we can adapt around it to minimise the consequences, even if it's not treatable. I was concerned that I may have a blood clotting gene, as it's an inherited condition and my sister has it, and has had two DVTs as a result. It's not a treatable condition, but may affect surgical options (this was before I knew I had OA). I had the test, proved negative, I don't need to worry about it now and doctors also have this useful info about me for future treatments.

Mike1

Rather than worrying what may be wrong with you it is, in my experience, always better for a label to be attached to it so I would go for the tests.

sunnyside2

Yes try for a proper diagnosis. not everything is fixed by a cure but treatment does alter if they know what is causing it. Sjorgrens can be serious so it really is better to know if that is what it is.

GrandmaT

To tell you there is no point in going for a diagnosis is wrong! There is every point in knowing what you are dealing with! GP's may not be able to prescribe treatment but there are other ways of helping you. Its not all about medication!

Failing to give you advice and, at least offer some help with the osteoarthritis is not acceptable either. I have osteoarthiritis and am elderly. If I had received help when I was your age i would probably be in a much better place now.

My advice would be to have any test on offer. Sjogrens, like Fibromyalgia ,(I was only recently diagnosed after years of being 'fobbed off') is diagnosed mainly by symptoms rather than test results but they can rule things out and clarify your diagnosis.

Dont give up! Pain is no joke! Its there to tell you something!

Hugs

GT

Dorothy

Thanks everyone! I'll go ahead with it. I've just been made to feel so guilty by medics in the past for 'wasting time' that I'm a bit paranoid now! But I must admit, it would be good to know. When I'm having a really bad day, there's always that question at the back of my mind, "Could I have done something to avoid this?" - if I know what it is, even if it isn't treatable, at least I can say "It's just 'x' causing trouble again - hopefully I'll feel better tomorrow."

Jona

Hi Dorothy,

please whatever you do don’t give up and please have the tests that your dr wants to put you forward for, if you read my posting you will see the years I’ve had to endure humiliation and mocking from different medical professionals.

if you would like to message me privately please do as some things are a bit personal I will be glad to help, stay strong where there is pain there’s a problem just need to find it

take care

love Jona 😊

helpline_team

Hi Dorothy,

Thank you for posting on the helpline forum, as everyone has confirmed it is very important to get a diagnosis, I know it’s not nice to be told that you could have a form of arthritis, but by knowing you will be able to manage your condition as this is so important.

It can sometimes take a while for people to be diagnosed with Sjogren’s syndrome, so it’s important you get an accurate diagnosis, so you can start the right treatment as soon as possible. Your doctor will ask about your symptoms and test the dryness of your eyes and mouth. It’s likely that you’ll also need to see an eye specialist known as an ophthalmologist, a dentist or oral surgeon, or a Rheumatologist before you’re diagnosed.

https://www.versusarthritis.org/about-arthritis/conditions/sjoegrens-syndrome/

Best wishes

Chris

Helpline Advisor

 

Dorothy

Thank you. I'm not bothered about being given a diagnosis (someone told me I shouldn't try for one as it might be 'upsetting' to know, but my view is that if I've got something, I've got it, whether I know I've got it or not - and if I have a diagnosis, it will help me know what to do when I feel bad), I've just been made to feel like a total time-waster in the past!

I've told the GP to go ahead with the referral, but she's said it will take a long time as there is a huge backlog due to Covid.

Thank you everyone for your support.

sunnyside2

I think a diagnosis helps. a few years ago I was diagnosed as very hypermobile and it explains a lot of my health problems. Its a relief to know what the cause is and also it was very helpful in regards to physio /surgery options as to what is sensible and what is not. I won't be 'cured'. it is not fixable but it is easier to control and deal with when I know what it is.