Hi, I got diagnosed in September 2016 (I didn't even know they were testing me for it) and have a count of 83(?). Just had my follow up and consultant thinks I've got something else that has tagged on to the lupus. Can't remember what it's called but it's rare and the blood test takes 8 weeks to do. Any ideas?

I will bring on Monday but it's making me anxious now.



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11 Replies

  • Hello valentine36

    In a word, no. I have no ideas ;) But I didn't want you to think you're on your own with this. It kind of goes with the territory, doesn't it - long periods of waiting for test results, uncertain diagnoses, weird sounding syndromes and muttering medics....?

    Someone else may have some thoughts, but meantime, hope you can have a good weekend x

  • I understand how you feel it's all pretty scary! I had a positive ANA a year ago when being treated for Hashimotos. Diagnosis of Lupus and began treatment in March. And following a recent MRI have overlapping myositis and have begun meds on Thursday. So I know it can be very overwhelming.

    You really just have to try to stay positive! They are looking after us and worrying isn't going to help. Just focus on a healthy diet, talk to your friends for support and take care of yourself x

  • I began with a rash over 2 months ago..Dr did ANA positive...Biopsy of rash...results Dermatamyotosis (skin and muscle) or Cutaneous Lupus....maybe overlapping?? I hope not....ENA panel shows blood work of DM....I d NOT like this!!!.....What symptoms led you to MRI test thank You

  • Sorry to hear this! I've been complaining for 18 months that I struggle getting up the stairs washing and drying my hair separate to fatigue. I had a barium swallow as I've been struggling swallowing thinking it was my thyroid (as I have Hashimotos) then an MRI which both showed inflammation. I think the MRI was conclusive as I've started treatment straight away,

    Tbh I have so many questions and am going to request Physio and my thighs are quite painful they hurt to touch and feel like I'm having spasms

    How are you with your muscles?

  • Thank You for your response...The problem with me is...I can get any symptom I hear.......My swollowing not 100%...but other than that, I can not honestly judge my muscles...I have the blood tests in the I'll find out...if I have both Lupus and Dermatamyotosis. I hope you get the answers you need also !!

  • Let's hope they've caught it early for you. I've found a myositis specialty Rheumy so asking my GP to refer me and I've emailed him direct so fingers crossed he'll be able to help me :) good luck! X

  • Yes..fingers crossed xo

  • Hi valentine

    It must have been quite a shock to suddenly be diagnosed with lupus out of the blue. I too have no idea what this extra could be, many possibilities but you should receive the clinic letter in about a fortnight which may state it . Good luck for the blood results and keep us posted. X

  • Thanks everyone. Just a bit worrying and the consultant is concerned as I had a heart attack in April so the last year has been a bit rough. X

  • Hi valentine36,

    I'm afraid that I do not know what your additional test may have been. There are quite a few different conditions that can be associated with lupus and potentially overlap. Do you have another appointment with your doctor to discuss it?

  • Just seen my GP and to be honest no joy apart from the fact that he won't get any results, it'll go to the consultant first!! Trying to get hold of her but no joy as of yet!

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