Has my mum got lupus?: Hi, my mum has various... - LUPUS UK

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Has my mum got lupus?

daughter13 profile image
7 Replies

Hi, my mum has various symptoms including, anxiety, depression, joint pain, night sweats, numb ends of fingers to name a few and i don't know if this is relevant but she also keeps getting iritus, don't know if anyone is familiar with that. her dr is useless, but because she hates going out or seeing people she wont change dr's. he says its not lupus, yet i have a friend who has it and i found just an anti malaria drug she uses abd my mums dr said he would prescribe it if she wants, slightly weird if he says she doesn't have lupus. Any opinions would be great, thanks.

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daughter13
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kittykat68 profile image
kittykat68

hi i have lupus and its great that your helping ur mum, your quite rite to question why he would just give a dangerous drugs out willy nilly , has your mum had any blood tests/biopsies, if you dont mind me asking your mums age , only i am the only person in my family with lupus , my mum is 70 and my aunt is 77 they both have quite alot of my symptoms my mum doesnt get any rashes but my aunt does anyway her dr has told her that if he investigates into her symptons and her ana (anti nulclear antibodies)is positive then that would be opening a can of worms at your age charming i said , but they are reluctant to be tested now and my mum just says she d rather plod along as she is , hope ive helped

daughter13 profile image
daughter13 in reply to kittykat68

She is 56, but has had the symptoms for about 3 years and she had had thyroid problems for about 15 years. She had had blood tests, but they came back fine, but i understand from looking to it that can take more than 1 test to diagnose anyway. Its so hard i want to help her because she feels like she js a hypocondriact but i don't know what to do

Catlady56 profile image
Catlady56

Lupus can start up post menopause. GP's vary a lot in their attitude towards Lupus. Some are very ignorant. At the very least your Mum should be referred for the eye problems she has been having. It also needs a specialist to work out what would be the best drug treatment for Lupus in your Mum's case rather than a GP having a guess at it if he was feeling in a good mood on that day. Perhaps you could arrange for her to see another GP at the practice and then go with your Mum to appointment? You sound like a very caring and capable daughter. Good luck with it all.

madison profile image
madison

Bless you, what a lovely daughter you are. I am 50 years old and was diagnosed 2 years ago with lupus. I was very unwell for many years prior to that and trudged backwards and forwards to my old gp who made me feel as though it was all in my mind. On seeing a new gp I now feel very blessed. My new gp looked back on old blood tests and was very concerned to find things had been overlooked, she said she thought I may have lupus. Cutting a long story short, I am blessed to be now under the care of a brilliant professor at city hospital Birmingham, on the correct medication and also blessed to have a brilliant gp. Yes I still have bad days but overall I'm blessed in my life. It will be an enormous help for your mum having you by her side, I appreciate she doesn't want to see another doctor but please try and persuade her, having the right care has changed my life. It won't be easy, I still get very sick but makes an enormous difference. My partner left when I was diagnosed finding it too much to deal with, I know how important it is to have somebody by your side, my sister was that angel in my life. Take care sweetheart, keep looking after your mum, you are making a difference to her life x

bluebell99 profile image
bluebell99 in reply to madison

What is it about doctors that they are unprepared to consider another diagnosis. Before my lupus was confirmed at 49 I had been having symptoms for more than 10 years. Photosensitivity, arthritis, Raynauds etc, all put down to anxiety and depression. In all that time my gp prescribed one anti-depressant after another. Yes I was depressed, but only because no-one was taking me seriously. After a course of counselling (which even the counsellor said she could not help me), I finally struck lucky with a locum doctor who sent off for ANA blood tests.

When that came back positive, I could have jumped up and kissed her. After all that time when I thought I was going mad or being a hypochondriac there was a reason why I so felt ill.

Unfortunately the locum couldn't refer me to a rheumatologist so had to ask usual doctor who refused, saying she was 99.99% certain I didn't have it.

I could do no more until we moved and I changed surgeries, the new gp was more open-minded and I haven't looked back since. It is not a nice diagnosis but certainly better than being told it was all in my mind.

Good luck and go with your mum for the test, and if it is positive she will feel better once she is on the proper medication.

daughter13 profile image
daughter13

Thanks you are all your very kind. Her doctors surgery only has one Dr, typical so extra hard, but hopefully we will get there eventually!

anniesensi profile image
anniesensi

Hi,

How are you? This must all be very worrying for you. Do you have anybody that you can talk to about this, perhaps at school?

Understanding and diagnosing health problems can be very difficult for everybody involved - even for our Dr's - and even for those of us who are experiencing them.

I am a mum, 38 years old and I have three daughters. The very most important thing for me is to know that my daughters live as near as normal a life as possible without worrying about me too much. I am sure your mum feels the same way for you. So it's wonderful that you care, and just knowing that you do will mean the world to her.

The odd cup of tea every now and again will never go amiss, and I think that it is really wonderful that you are informing yourself as much as possible about what may be the matter. But what is really important is that you don't feel alone and wholly responsible for any care your mum may need. I do think that a chat with a kind teacher at school could help you know what the right thing to be doing is.

Your mum is lucky to have such a considerate daughter :)

Hope everything gets better soon,

Annie x

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