Newbie

[jozyjump]

Hi everyone, I'm looking for some advice. I hope you don't mind me asking. I've been suffering for the last 14 years with symptoms that my optition, dentist, physio and gynae are all telling me are lupus but the dr refuses to blood test me as he said he did it 4 years ago and everything was normal. These people have felt so strongly they have written to him and he says it is just a case of me getting older. I have spoken to several different Drs who all agree. I have migraines (diagnosed), reynaurds (diagnosed), tinnitus (diagnosed), inflamation in my hips and back causing terrible pain, exhaustion, dry eyes, dry mouth and issues swallowing, nose ulcers inside my nose, jaw pain into my ears with head pain, sun rashes and sensitivity to the sun, hormone issues. I am not sure what to do now and feel really low and frustrated and the Drs just make me feel like I'm crazy and stupid. Does anyone have any ideas of either what to do, or what else it might be? I am not making this all up, I couldn't make up the reynauds or nose ulcers are they are very visible. I am not stressed, I am normal weight, go to the gym several times a week for a swim, and hold down a term time job, but also know this is my limit and with my exhaustion couldn't hold down a full time job. I'm grateful of any help and suggestions. Many thanks

[whisperit]

Hello jozyjump

That sounds like an odd situation. When you say your GP is refusing to order further tests, do you mean that you are reliant on a single handed GP practice? If so, then can you change practice? If not, then can you make an appointment with another GP in the same practice? You also mention that other health professionals, including 'gynae' and 'several different Drs' have urged further testing. If you have any other medics involved in your care, they too should be able to request a blood test without going through your GP.

As for another explanation of your symptoms, the LUK leaflet on symptoms and diagnosis may help you to identify what

markers are most helpful in a diagnosis of systemic auto-immune

disorders. lupusuk.org.uk/wp-content/u...

But it's for your doctor(s) to come up with an account of your symptom picture that makes sense to you. Clearly 'just getting older' is no explanation at all. As a last resort, you could consider seeing a rheumatologist privately. x

[Comeonpeeps]

That's terrible they won't do blood tests, 4 years is a very long time!

I would change GP practise if you can.

[Paul_Howard Partner LUPUS UK]

Hi jozyjump ,

I would follow the advice of other members of the community here and recommend that you see a different GP. If so many other doctors are suggesting this as a possible diagnosis then it should really be tested again - if for no other reason than to rule it out.

We have a blog article which includes information and advice about getting a diagnosis of lupus, including guidance on how to change doctor - lupusuk.org.uk/getting-diag...

If you need more information about lupus and LUPUS UK we also have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[eekt]

The doctors had me down as crazy for years till the ANA/dsDNA test was done (and positive), because routine blood tests - thyroid, iron, VitD etc - were normal. Have a look at the BSR Guideline (doctors in the UK MUST use this in assessing SLE) Table 4 - academic.oup.com/rheumatolo... - and see what you think.

There has to be 4 criteria met for a SLE diagnosis, but there are 100+ auto-immune diseases. Note as fatigue can't be measured, it's not included in 'clinical symptoms'.

It was observations from medical professionals other than GPs that led me to diagnosis. I read in a post that GPs get half a day's education in auto-immune illness (?*?!) and they sleep through it...

If you read through some posts on getting a diagnosis, you'll see very many other people struggle with ignorant doctors. You're not alone, and there is all the support you need on this forum. Be informed, take reliable info to your next consultation (like the BSR Guideline), and unfortunately you might need to persist. Don't suffer any longer xxx

[jozyjump in reply to eekt]

Thank you. I guess I'm just lacking in positivity temporarily! I know I don't feel right, and people keep suggesting auto immune, but the gate keeper says no! I've emailed my dr and requested an appt with a reumatologist specialising in auto immune. I've said that I cannot let this lie anymore. I decided to pull some fire out of my belly!

[AgedCrone]

Why not ask your gynaecologist to do the appropriate blood test..... if he/she refuses ......to put your mind at rest get it done privately & know once & for all where you stand.

After 14 years you should not need to still be worrying about a diagnosis.

Are you on any medication? If not that may be a good sign that you don't have Lupus, as surely your condition would have deteriorated much further in all that time ?

[jozyjump in reply to AgedCrone]

The Gynae wanted to write to Dr out of respect first, and now she is on holiday and am seeing her at end of September for Zoladex injections. I'll ask her again. She's really nice so I can't see why not, just a waiting game.

[AgedCrone in reply to jozyjump]

That is an excuse. JJ.......I'm glad your Gyny is nice.......but she could be still polite & respectful & inform your GP she felt you needed the test.....urgently .....to set your mind at ease.

After 14 years, you will have to speak up or you will get nowhere fast.!

You are now waiting another 5 weeks...to get the test......& if you see the same GP the answer will probably be another No.

You must either change GP or tell the Gyny you want her to order the tests........otherwise how will you know?

[DJK99]

Hey there - I agree with all the above respondents. Dreadful situation, and a highly inappropriate response from your GP. I would try talking to PALS who are there to support you with this sort of issue. this link gives you further info:

nhs.uk/common-health-questi...

All the best, and do let us know how you get on x

[jozyjump in reply to DJK99]

Thank you for this. I will. I've been a bit lost where and what to do next.

[AgedCrone]

Are you inUK?

[jozyjump in reply to AgedCrone]

Yes