Advice please!!

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I have recently been diagnosed with small fibre neuropathy. I have also had a positive ANA blood test 1:320, my hair is like straw, and underneath my fringe my hair is snapping off, my body aches, my wee has blood in with no infection and smells funny, I have extreme tiredness, and days where I just can't do anything. My sister has lupus, but the neurologist says it's not worth referring me to the rheumatologist as lupus isn't genetic. Should I push for an appointment with the rheumatologist? I feel like crap most of the time and my body feels like giving up. Please could I have people's opinion.

Thankyou

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  • Posted

    Hello Luisa,

    My name is Tanya and I have Discoid Lupus.  It affects the skin; my forehead to be exact.  I have not had a positive ANA (thank God) but I am taking medications.  I was told that it is Genetic, maybe only the Discoid Lupus.  However, I think you should see a rheumatologist more sooner than later; just to make sure.

    I hope you feel better.

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  • Posted

    HI Luisa I am Vanessa I am based in Italy, I am 41 years old, I am doing all the test since 1 year for small and big fibre neuropathy as I have connetivite and Lupus but nevere had big problem in the past, from 1 years I fell very tired, with paresthesia, pin and needles hands and foots, difficoult digestion...my suggestion is : try to find a good reumathologist that collaborate with a good neurologist, They try to give me cortisonic but not really a good solution for me at the moment, I have also shortness of breath.Hope you find a better solution then mine.
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  • Posted

    HI Luisa I am Vanessa I am based in Italy, I am 41 years old, I am doing all the test since 1 year for small and big fibre neuropathy as I have connetivite and Lupus but nevere had big problem in the past, from 1 years I fell very tired, with paresthesia, pin and needles hands and foots, difficoult digestion...my suggestion is : try to find a good reumathologist that collaborate with a good neurologist, They try to give me cortisonic but not really a good solution for me at the moment, I have also shortness of breath.Hope you find a better solution then mine.
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  • Posted

    Absolute nonsense, I suggest your Neurologist stick to his own game and send you for blood tests for SLE as it might not be worth it for him but it will either confirm if you have Lupus or not but cannot leave it as an unknown, please you are the patient and push harder for what you want and if he cannot satisfy your needs go to somebody who can.

    Your body tells you how you feel and the signs are their but fingers crossed it will come up negative!!

    All the best

    Peter

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