lupus -should i see dr again?

definitely have the characteristic butterfly rash and skin and nasal sores of lupus.bruising around eyes i've read is symptom of sjogrens disease??face is swollen and puffy around eyes and forehead and now forehead,browbone,cheek bones,collar bone are all painfully sore like ribs.only saw dr last week for something else and twice before that .my stomach is getting bigger and larynx and lump under jaw are more enlarged.thinking make an online appt and in the nessage box put -:-butterfly rash of lupus,bruising around eyes of sjogrens,swelling pain and tightness in neck.abdomen more swollen.also my left calf is swollen.should I list all these things.i am quite scared about making appts to see him now as he wont refer me back

to hospital.

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8 Replies

  • You certainly need more checking especially with one leg swelling, you need to have your thyroid checked and also a test for Hughes Syndrome as well as Lupus, also Sjogrens Disease. I have these four plus one more, I went privately in the end to London Bridge to remove the blocks in my care! Can you see another doctor in the practice, or go to out of hours. Also if you leg really is swelling and or hurting go to casualty. Kind Regards. Mary Fx

  • I have bruising around my eyes (about 2 years),is this a symptom of it somewhere btu when searched reference to it

  • I think it can be, I don't have this.. but severe bruising around the eyes can be symptomatic of a other disorder. Important to distinguish between very dark circles and bruising. However push for that Rheumatology referral so you can get a panel of bloods done in more detail. Also you could join TUK on this platform and load up your thyroid results. as they have real expertise on there! I came to start with as having nothing wrong, but persisted. Your GP or Rheumatologist can also do the Schemer's Dry Eye Test. Good luck. Mary F x

  • thank you mary. will make an appointment to see a dr -mine or one other -don't like any of the others in the practice -they are a waste of space. and list symptoms -if i can print out you reply will take it with me. have had TSH which was at higher end of range. not T3 or T4 which I believe from here are other tests??going on line now to see what appointments are available.

  • Your doctor needs to be aware that some people with Lupus have Hughes Syndrome, and those with Hughes Syndrome often have Thyroid disorders plus Sjogrens disease. Lots of people are on several forums I am. Thyroid UK is on this platform and understand that people with autoimmmune will often have Thyroid disorders. I had a situation many years ago, where I was not listened to, I traveled to London Bridge and my care was turned around and diagnosis achieved, but this was a private self referral. Your doctor could test you for Lupus and Hughes Syndrome, and certainly your Thyroid needs more attention. There are private specialists throughout the country who are used to seeing Hughes Syndrome, to diagnose or rule it out and who will also be well up on Lupus. Let me know where you are located, and by private message I can send you a list. Mary F x

  • northumberland

  • Hi... I am not suggesting you definitely have Hughes Syndrome, but it is a possibility to explore, also any specialists on the list, in your nearest area either private by self referral or NHS would understand Lupus also. You could perhaps ring one private clinic up and ask for advice if you can't get anywhere, as it all sounds a bit stuck. Take along somebody you trust to the GP and firmly ask for a referral, if they say know you may have to pay yourself for a one off of appointments and tests, at least they would get to the bottom of the autoimmune possible profile. Many people even fly down from Scotland just to attend the London Lupus Centre at London Bridge due to similar problems. All the best to you:

    Mary F x

  • Make a list of everything and every symptom you can think off and give it to the GP, take a copy for yourself to refer to and make sure you make it as clear as possible that things are not ok and it warrants further investigation.

    Tell him/her that with all these symptoms something else is going on and it may be autoimmune related and ask to be referred to Rheumatology at you nearest hospital.

    Be strong, don't play down your symptoms and don't take no for an answer - any GP who wont be sympathetic and take appropriate action when given clear and concise information like this in a rational way is not fit to practice (in my own humble opinion) and any worth their salt will listen and will help.

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