Can't be Lupus says GP...well what then?

Hi Everyone.

I posted last week about meeting with my GP. I showed him the pictures and notes I had made with my symptoms. I said I have an open mind but I know something is wrong with my body.

He said it can't be Lupus - I am too young (my sister was my age when she was diagnosed)

Convinced my headaches are migraines ( because that's what neurology decided via a questionnaire nothing else) but they aren't reacting to painkillers and my old headaches used too.

He said my joint pain is probably down to my Psoriasis ( well I would have PA if that's what he is thinking)

My ANA blood test was neg in 2013 so won't do another test.

He started asking about work and if I was stressed ( I have suffered low mood and anxiety in the past) but I am actually great at work and I love it. ( they are fab when I have bad days so they are incredibly understanding as I already suffer from Endometriosis)

I am weak most of the time, constant lightheadness and dizzy. Artificial lighting is killing me at the moment. The joint pain is so bad at the moment but it's just shrugged off. I keep getting a spasm and pain in my leg too. Mouth ulcers/cold sores all the time etc etc. I know something is wrong :(

I have watched my mum sister and aunty suffer RA. sister Lupus and my aunty with MS - i know the horrible things autoimmune diseases do. I AM NOT IMAGINING THIS.

xx

18 Replies

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  • Of course you're not. Go back to the GP and say that you've thought about it and you're not convinced by his assessment. Things are far too debilitating to be the things he suggested. Say you'd like to be properly investigated and could he send you to a rheumatologist, please, you can't aford to allow your health to deteriorate further.

    If he refuses, ask him to write a letter to you setting out all the reasons why an autoimmune disease isn't likely and the reasons for his refusal to refer you.

    I wouldn't waste time having yet another ANA test done there, just say that a rheumatologist would do all the tests anyway, so why dry your veins in advance.

  • Thank you Purpletop for the great advice x

  • Purpletop has given you some great advice in her comment. Another potential option is to try switching to a different GP, either within the practice or at a different practice in the area (if you are able). A referral to a rheumatologist for further investigation would be best.

  • Thanks Paul. I think I am going to switch GP. I had purposely stayed with this GP practice as my old GP was fantastic, especially with my diagnosis of Endometriosis. But now a new GP has started and the practice has changed for the worst. I feel like I am starting from the beginning so it is worth finding a new GP now.

  • Have you been tested for Hughes Syndrome/APS/"sticky blood"?

    hughes-syndrome.org/

    healthunlocked.com/hughes-s...

  • It's never been mentioned so I am not sure.

  • Have a read of the website, and ask if you have been tested - blood test.

    I forgot to say you are not too young to have Lupus, unfortunately children can and do have it. Best wishes

  • I'd love to know at what stage of training in medicine they develop this concept that everything is age-related? We have PMR/GCA patients told all the time it can't be either one because "you are too young" - how can you be old enough at 50 and not at 49 because we've had that sort of comment! GCA has been shown by the pathologist at age 37 in a male - they know it all but too late.

    Anyway - I recommended the blog Despite Lupus by Sara Gorman to someone the other day. She was dx'd at 26.

    Purpletop is too kind - I wouldn't see that GP again, I'd look for another. Even if it needs you to move practice. And insist on a referral - but it might be an idea to ask around the forum if anyone lives closish to you and can recommend someone. Because we also meet rheumatologists with age-fixations.

  • I know my thoughts exactly!

    I am 26 next month and my sister was diagnosed at this age so I know not to believe him!!

    Will be looking elsewhere. His main issue is with my bloods from august ( full blood count not ANA) and they were all within normal range

  • "The chances of developing lupus are higher in people who:

    Are female.

    Are black.

    Are between the ages of 15 and 45.

    Have a family history of lupus.

    Take medicines that are associated with drug-induced systemic lupus."

    webmd.com/lupus/guide/lupus...

    OK - so that comes from the big bad interwebs that non-medics should never look at.

    This comes from a UK-based site developed by doctors for doctors originally

    patient.info/health/systemi...

    "SLE affects about 5 in 10,000 people in the UK. It is ten times more common in women than in men. It most typically develops in women aged between 20 and 40. However, anyone at any age can be affected. It is more common in people from Afro-Caribbean, Asian, or Chinese origin. Although SLE can run in families, only 3 in 100 children of people with SLE will actually develop the disease."

    Strangely, their professional reference indicates an older age group. Perhaps there is a problem there.

  • Your GP is on another planet. My lupus was first diagnosed when I was a toddler by a GP who was on this planet. You've got some great replies...hope you'll let us know how you get on 🤗 🍀

  • Thanks Barnclown. Your reply made me laugh. Thanks I really appreciate it x

  • 😘🍀

  • I agree about your GP being on a other planet. That said my GPs have been very unwilling to refer me to specialists over the years here - I live in Scotland. A GP friend told me that they get a severe scolding/ reprimand from specialists if referred without absolutely clearcut reasons for doing so. This means they lose points and, as well as a financial dicincentive, this can impact negatively on future referrals.

    That said I got a very rapid referral to rheumatology because of things that showed in my full blood count along with symptoms. I believe my former GP had his fingers burnt for not referring a patient who had seronegative RA until she had already suffered erosive damage so he learnt the hard way.

    With rheumatology I believe this should be a referral on the basis of symptoms and family history rather than bloods though. RA and Spondyloarthritis often show negative in bloods and if you have psoriasis and endometriosis then your GP has clear evidence of autoimmunity already, never mind being guided by your symptoms and family history. Kids can get inflammatory arthritis.

    To make you laugh - a professor of connective tissue diseases told me I was too old to have lupus at 51 so there is no winning where age is concerned!

    Best of luck being as assertive as you need to be. X

  • The professional reference for SLE on patient.info says, under epidemiology:

    "The age-standardised SLE incidence in the UK during the 1990s was 7.89 per 100,000 for females and 1.53 per 100,000 for males, with an overall female-to-male ratio of 5.2:1. Peak incidence occurred at age 50-54 years for females and 70-74 years for males."

    When I was in school 51 came somewhere between 50 and 54 - and it still did 12 years ago when I was there personally ...

    Where DO they get their ideas?

  • He wrote in his clinical letter that if I had lupus all along as I still suspect I did, then by now, post menopausally it would be improving rather than progressing. This is because lupus is at its most active during the child bearing years and tends to diminish post menopausally. So by now I would have organ involvement - in either my lungs of my kidneys apparently. My new rheumy would just say that I don't have SLE because my ANA is negative of course!

  • Hi. I am sorry to hear if your struggle. I too have had many battles with my GP and often feel they ignore symptoms as I'm in my 20s. I'm not sure if this is possible for you but if you could get some funds together to see a rheumatologist for a private assessment initially they may then take you on as an NHS patient to do the tests. I have resorted to this before although I appreciate it is very difficult financially and may not be possible. My heart goes out to you as I get so upset when I feel my GP doesn't believe me. Take care.

  • So sorry you have experienced one of life's planks.I too had a Gp who said I didn't look like someone with lupus ,I am diagnosed with Sle,RA,Eds,Sjogrens plus+

    The same Gp said my neck swelling and dizzy spells were hayfever and fibro turned out thyroid cancer so seriously give GP the big fat elbow,not literally despite it may knock some sense into them,and move on.GP practices are being paid Not to make referrals or to at least minimise the amount so if your with that sort of practice you will have a fight.

    Good luck and wishing you all the best x

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