Help please with diagnosing Vasculitis/ GCA and autoimmune conditions.

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Hi, I’ve been having swollen veins or arteries on the head - side forehead to outer eye area on and off for 4 months along with headaches, head swelling feeling and a chronic sore throat when it flares up. I generally feel awful with fatigue and joint pain too. I have an autoimmune thyroid condition and have had Chronic fatigue syndrome & fibro for a long time ( I feel I’m getting written off because of this!) All these symptoms are different and new to any I have previously experienced. I have been to the doctor 3 times and have had bloods done which indicated apparently it isn’t GCA ( unlikely due to my age also,  late 30’s) And the Doctor assures me it isn’t the temporal artery although it does pulsate. According to him it must be stress! I have also developed pulsatile tinnitus when lying down. I have had a MRI & MRA recently too which hasn’t picked up the problem. I feel like I can’t go on like this and am spending more and more time in bed feeling dreadful.. Please can someone give me some advice on where to go next. I’m happy to go private but do I see a neurologist or rheumatologist. Is there more specific tests for autoimmune conditions? I feel I need to see someone who is going to investigate this properly and not keep fobbing me off, something is causing this and the NHS don’t seem willing to do anything else for me. 

I’d be so thankful for any advice! 

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  • Posted

    Hi, Marie,

    Sorry to see that you are having these health issues. In regards to getting some answers, can you look through your blood work to see if any doctor has done an ANA test yet? I'm very new to this whole scenario myself, so I can't help you much. But I do know that the Anti-nuclear Antibodies test will show presence of an auto-immune disease. Mind you, that test won't specify which auto-immune disease you may have, but it gives the rheumatologist a start.

    In my case, I had purpura all over my legs, so the doctors in the hospital did a biopsy of two of those spots. This biopsy in combination with the positive ANA test led them to diagnose Hypersensitive Vasculitis.

    Whatever you decide as far as which specialist to see, don't give up until you feel you have answers! Best of luck to you.

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