So no diagnosis yet. I posted on here a few months ago and i am only just going to the doctors to discuss this as unfortunately my endometriosis kicked up a massive fuss so I have been in and out of hospital with that.
Anyway,
I really want my doctor to take me seriously about the possibility of Lupus. I just need to know what to say, how have you pushed for a referral to a rheumy? I have only ever seen one about 3 years ago for suspected RA as it runs in my family and I had joint pain, but no damage was seen.
Well my joint pain is back and really bad, in my knees and wrists especially. I had been feeling better since summer has passed ( I was really unwell and the sun was making me very ill and I had rashes on holiday) but with the cold weather it has all flared up again.
My symptoms as well as joint pain are:
Headaches with dizzy and issues with artificial lighting at work ( This has been an on and off issue since falling ill in the summer and my doctor referred me to the neurologist who has diagnosed severe migraine disorder. I don't agree)
Chronic fatigue (but my doctor is happy that it's just down to my Endometriosis)
Chest rash
Wheezing and coughing - I got told it was allergy induced asthma but had no proper test but given inhalers. However this came on quite suddenly a couple of years back and since then whenever I get a bad cold I get a really severe chest infection that sees me in A&E or walk in centre - always needing Steroids. The steroids make me feel TONS better and it is the only time I feel normal for a week or so and then back to tiredness, aching, fever etc.
Mouth ulcers
Ankle swelling
Also my sister has it.
Autoimmune diseases run really heavily in my family.
How do I make my doctor listen when he thinks that there is a reason for most of my symptoms. I also suffered anxiety and depression, not so much anymore....I don't want to come across like I'm a hypochondriac.
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I had great difficulty getting a diagnosis, and in the end sat down with my gp with a list of all my symptoms and said is their one condition that could cause all of these issues (having already done my research but not suggestin what I thought it was) and he said put like that yes. And he referred me to a different rheumatologist.
Oh heck - it's so hard isn't it? I think what MargaretGail says is the right way to broach this. I'm seeing my GP tomorrow and am five years into this now and I have a rheumatologist -but I'm still sure she will have privately put me on the high shelf as a patient with health anxiety - but enough about me!
So I would start by asking your GP to run blood tests including autoabtibodies (ANA, Rheumatoid Factor etc) and also a full blood count plus CRP. You might want to avoid taking any inflammatory drugs for a few days prior to these tests. Then see where this takes you because the results might lead to a referral to a rheumatologist. If not then I suggest you get print outs anyway and regather to push for a referral despite negative blood results. ANA and rheumatoid factor often move from negative to positive - and in my case the other way round too but apparently this is unusual. RA and inflammatory arthritis can present in seronegative form so negative autoabtibodies should not rule out a referral - your joint pain should be enough for your GP.
Make a daily diary of all your symptoms. Take photos of the rashes , bumps, swelling on joints etc on your smart phone so you can show the doctor.
I think we all have the same problem at first. I thought I had imaginary pain and fatigue for years. The first rheumatologist I saw wasn't helpful. I found my nearest "expert" on line and asked for a referral to him. I drove from Cornwall to Bath for the appointment. Eventually confirmed. Don't give up. Keep going back to the doctor. Good luck 🍀
My doctor doesn't listen to me either. If it's going to cost a lot of money to loads of tests I think they just fib you off with other answeres. My doctor won't admit I've got CMT even though I was diagnosed with it years ago. I'm sure I have Lupas as well because I have all the symptoms . I've found a lot of answeres on here for things that happened to me years ago when no one knew what was wrong. Things that made me think I was going mad. I've got reynards and arthritis as well plus underactive thyroid.
I was diagnosed quickly. Started showing symptoms in June 2015 and was diagnosed in November. My father has Lupus and Hughes, when I started showing symptoms I was told on more than 1 occasion I had a virus...kinda got bored of that so told my GP of my dads illness and they quickly ran tests.
The first result I got back was my thyroid which was underactive so I was prescribed Levothyroxine. Then the others came back - all abnormal. I had to wait about 3 months to have them all done again and when they came back still abnormal I was finally referred to a rheumatologist.
It was my first time meeting my rheumatologist and I was diagnosed there and then with Lupus, Hughes, Sjorgens and Raynauds as well as the under active thyroid.
I would 100% lay out the facts of family history to your GP and get all your blood results printed off for your own records. I did this and it has proved very helpful to have them on hand.
Definitely take advice of writing everything down and I have some photos to show him. My GP has recently changed ( old was fantastic and always listens too me) new one I am not so sure on at the moment. I am going to push the family history thing too.
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