Lupus or not?

Lupus or not?

I have been in and out of the doctors with one first telling me he was sure it was lupus, then the blood tests coming back negative. Others have believed its Fibromyalgia and ME whilst another doesn't even 'believe' in ME. ALL of my symptoms are just so much like Lupus that I find it hard to believe its not yet. Although my doctor believes that blood tests are near enough always right, I was diagnosed with an under active thyroid a couple of years ago but that took forever to diagnose after many blood tests coming back with everything being apparently fine, until they finally found out my thyroid levels were extremely low.

What do you all think? Have you ever had this issue? I feel like I'm losing the will to push the doctors to help me. I have been ill for years and it is getting worse and worse as the years go on, especially this year.

I have also started having itchy patches that sometimes come up like those attached in the picture, even though I don't scratch it that much. Could anyone please shed some light on this?

Im so sorry you have had to read all of this but if you have got this far, thank you!

And I'm sorry for the photos, I just feel like I'm out of options :-(.



9 Replies

  • So sorry louyoung92 to hear you are in turmoil. With lupus, it mimics many other conditions, and no two people are the same that have lupus. Thyroid issues are part of my lupus, but there are many who do not. Your photo of your foot, looks very sore, but I don't get anything like that. You may get replies from some who do. The bloods are a tricky subject. Drs seem to vary on opinions on what is a confirmed diagnosis. I know I am not helping much, but don't give up your fight. This is what puts you at the bottom of the list each time. If you are strong but not rude/abusive, they should at the very least take you seriously. If not then can you change your Dr. Take care and hope your probs get sorted soon.

  • Thank you for your reply :-) I am going to go to the doctors tomorrow and push for more help as its all getting a bit too much to cope without a diagnosis. Keep well.

  • As I said keep strong, only you are fighting for you. I truly feel for you whatever is wrong as I went through the same. Don't know your business, but I did take the private route. It is costly, but if you see a Dr who also works on the NHS, they will transfer you to their NHS clinic. Only snag is GP has to refer you to private clinic. My GP was only too glad to give the prob to someone else. Soon looked stupid when I was diagnosed. Best of luck

  • i to have lupus symptoms btu my GP has only gone on what the rheumatologist said (at appointment he ddint give me the chance to tell him)and i found out a lupus blood test i didnt know he had taken was negative.I too have skin rashes on my scalp face legs and hands -like yours btu he wont link them all together treating them a separate conditions

  • see my post with pic of my hand

  • Hi Louyoung92

    I am so sorry to hear of your awful battles to get a diagnosis. If it's any consolation you are by no means alone. A suggestion I have got is you could ask to see a dermatologist for your skin rash, they can diagnose Lupus via the skin or at least give you help. I hope seeing your GP is helpful and don't give up, I know it's hard when we're ill. X

  • Hi , there are so many different types of rashes , I think the best thing to do is go a dermatologist and git a biopsy done ... Are you allergic to metals? Have you changed washing powder/liquid lately ?

    If it's been there longer than 3 weeks you should ask for referral to dermatology and let them take a small punch biopsy ,then you will know for sure !

    Best of luck and pray it's not lupus .


  • Hi Hunni,

    firstly never apologise for how you are feeling, I am pretty sure that many of us here have felt exactly the same way before. I know I began to completely lose my mind at one point when my bloods would come back positive one month and negative the next.

    it tool me years of persistence to finally get a diagnosis - even now they flit between SLE and Undifferentiated Connective Tissue Disease - mainly because the only constant blood test is the ANA which is always positive. The first thing I would do is persist with your GP and get them to refer you to a rheumatologist. This will be the place that can give you at least some answers - write down all your symptoms, things that trigger them and how often you get them. My symptoms were so odd that I kept a journal of everything, from exercise to the fact that I swell up when I am too hot. Keep this diary for a few months and then take it with you to your GP/Rheumatologist.

    Even though you may be convinced it's Lupus, it may well not be as there are hundreds of conditions that can present the same - this does not mean that you are not suffering whatever the outcome - this means that you need help and to get it you need to fight!!!

    keep your chin up and get ready for a long ride - but it will be worth it in the end.

    Cass xx

  • Thank you all for you lovely and very helpful replies. I am going to see a different doctor today for a 2nd/3rd/4th opinion (I can't remember anymore). I hope you all keep well. X

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