Trying to making sense of this illness

Hi all,

I remember writing a submission two years ago, with vague details about my diagnose of Lupus and I want to indulge some more information.

My medication:

Tramadol/ Codeine & Paracetamol phosphate. (I do not take these two pain killers at the same time but alternate them)




I am twin and 25 year old male who does not drink, smoke and do drugs.

First things first, my mother did her family tree and she was able to find that she had relatives in the south west area of the Uk and as she was able to obtain some information about her side of the family's medical history. One of my great aunties has Crohn's disease, another great aunt died of esophageal cancer, and the last great aunt (No surprise) has Lupus. So after hearing this news I made a doctors appointment with the doctor who gave me the specialized blood test that went on to discover the Lupus, so I discussed this problem. So I told her of the new family history that my mother discovered with my great aunties illnesses, and it didn't seem to strengthen and concrete beliefs that my Lupus is the main culprit of my gastrointestinal disorder (I've mentioned in my other posts I suffer with Gastritis, esophagitis, IBS we aren't sure if it is IBS as I'm being investigated for IBD disease and previous peptic ulcers.) She told me that my Lupus went up and down and she said I need to have a 'Anticoagulant' check up again and even though she thought she booked me in with a immunologist, she is going try and re-book me to see the specialist which she failed to arrange last time she said she was. I think this is related to my gut disturbance and this also strengths my beliefs I have Lupus, my twin sister was diagnosed with a under active thyroid as well.

I hope some one can shed some light as I've provided a little more insight.

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2 Replies

  • Hi Eatpower

    Interesting family history you have which is why it's right your symptoms are properly investigated!. Your gastrointestinal symptoms should be overseen by a gastroenterologist and you've been referred to an immunologist who will look at your immune system , give you the anticoagulant blood test and other more specialised blood tests and maybe will diagnose Lupus. Both specialities will be interested in your family history and will ask. Hope I've helped? Good luck with getting help.

  • Have you been tested for Crohn's yourself? It might not be lupus causing your symptoms but other autoimmune stuff, although lupus could too. Your doctor seems to be the type that relies on blood tests to tell her what's wrong, only there are no reliable tests for lupus, she should do a bit more than check your anticoagulant. Has she checked for vasculitis at all?

    I'm not looking to panic you here, just to say that there could be many causes for your symptoms and taking into account your family history and your continuous symptoms, you should be checked properly. Keep pushing!

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