Can anyone tell me why a Lupus diagnosis takes so long. My wife has finally received her diagnosis after 2 years of appointments.
Also, does anyone who has Lupus get a twitch in their eyelid. Thank you very much
by the way I am here because my wife does not like computers
You are a great and supportive husband. She’s a lucky lady. Please tell her we welcome you both, though, wish you didn’t need to be here, if you know what I mean.
Thank you Brooksidecourt for yourvery kind words. However, I love my wife so much, I would do anything for her. I would even have the Lupus instead of her.
She is my star.
Ahhhh, I hope she realizes what a lucky and blessed woman she is. I bet she does. All my best to you both🙏.
just-typing, you two will get through this. Once you get a diagnosis, you’ll either find out she doesn’t have Lupus and will deal with whatever she does have, or you’ll find it’s Lupus and you two will face it head on, learn as much as you can about it, and tackle it together. My suggestion would be whatever it is, keep a positive attitude and laugh often. So many things can try to control us, but we are the only ones in charge of our attitude, and attitude is everything! Not to say I don’t get down sometimes, but I know I do better if I laugh in the face of this and keep my attitude positive. It helps those around you as well.
So again, all my best, and I pray the best for you both. But as long as you have each other, you can’t go wrong. Be strong 💪. And keep us posted!
Thank you Brooksidecourt.
I must apologise for not making myself clearer. She had the result a couple of weeks ago, and yes, she has it. At times, she looks so pitiful, her eyes lids go red and her eyes start to smart. she now has a twitch on her eyelid, and we were wondering if it is part of the Lupus.
My mother was diagnosed with Lupus about 12 months before she went to sleep, so, I can't ask her.
Kind Regards
and keep YOUR chin up
I don’t know about the eye twitch but I’m sure someone in here can answer your question. I’m sorry I misunderstand.
We are doing our utmost to reduce the time for diagnosis. Hopefully the medication will help to improve life. Best wishes Kevin
Thank you Kevin53.
You must be a member of a medical team who deal with this kind of thing. Can you tell me about the twitching eye lid please?
Kind Regards
Hello, I am a fellow twitcher 
Someone with greater knowledge on here will be able to explain possible reasons for the twitchy eyelid thing (I think I read something about 'systemic fatigue') but I can empathise with how annoying it is!
Best wishes.
I’ve had the eye twitch I attributed to times of stress in my life, but just for a few hours in the day.
You are a keeper, by the way ⭐️ A very fortunate wife and a very fortunate husband to have someone you love so much.
Thank you very much Lupiknits.
I hope you too get relief from it.
Kind Regards
I'm also a 'twitcher' and I notice it most when particularly fatigued.
P.S. you are a keeper!
Thank you MEGS53
I am passing these comments on to my wife.
Kind Regards
The eyelid twitch is more likely a result of the stress caused by your last two years of medical searching rather than from the disease. My eyelids have twitched on and off throughout most of my life. My doctor always assured me it was ok and quite common.
I hope that your wife finds relief from symptoms now that she has a diagnosis. In addition to great meds available now a few life style changes have improved my quality of life immensely. A year of mindfulness meditation, daily thirty minute walks and a diet high in fiber and resistant starches and I feel ten years younger and happier now.
Also as a caregiver please remember to put your oxygen mask on first! I have been both the caretaker and the patient. My husband had rectal cancer three years ago.I can promise you the patient role ( in my forties, I had a massive stroke in October 2018) was by far easier in so many ways. Take care of yourself and seek support where possible.
Thank you Roarah
Every one has been very kind with their replies. I am glad I asked my question now.
Kind Regards
I have no diagnosis so may not be relevant but I have lupus symptoms, whatever my problem is , and I have a dropped eye but other eye in past weeks has developed a twitch in eyelid. I have had symptoms and still on journey for two years over . So sorry that your wife has received the diagnosis but pleased she has an answer after so long. And so nice that she has a loving caring husband . If your wife is lucky enough to have furthering appointments now diagnosed, to keep check on things I would mention it or at least to gp. Someone else may be able to answer hopefully and advise
Best wishes 🙏
Yes, I have the eye twitch, always in my left eye. It comes and goes. No obvious links. On half term and it’s started.
The diagnosis road is long as Lupus is such a master of forms with many false avenues. Sadly, the diagnosis does not make it easier, the fight for support continues. Drs vary in knowledge and understanding. There will be many times your wife will be made to feel like she is mad or a player, just trying it on. You are wise to join this community as their support is invaluable. Not just the medical knowledge and advice but the realisation you are not alone or mad.
You, as a partner will be the greatest medicine as you will let her be her, the person she was before diagnosis. Sometimes, as a sufferer you can feel that the Lupus has taken the real you away as you lose the bits of life you once enjoyed. Walking, travelling, eating out, talking in a coherent sentence. So, the love and support of a partner goes a long way. But you need to find support and outlets for you as well as it must be rough watching a loved one with Lupus.
Best wishes to you both and welcome to the weird world of Lupus and autoimmune (AI).
Thank you Hamptons. That is such an insight into the world of Lupus. As you will have seen, I have had lovely replies and as my wife is a fighter, she won't give up.
Kind Regards
Hi just-typing,
Doesn't look like you had an answer to your original question "Can anyone tell me why a Lupus diagnosis takes so long." I do not have the answer, but it seems like there are many people who have waited many, many years before getting a definitive answer. I was lucky, it took 4 months for a diagnosis, though I can look back and see many indicators that never came to the surface to point in the right direction.
Whatever the reason, be glad that your wife now has the diagnosis and can move forward. By the way, you are a great guy for trying to understand.
Thank you very much Lowraind. Tho I didn't put my activity for praise to me, it's just that my wife hates computers. And I would do anything for her.
Thank you for the info. Kind regards
I twitch all over all day/night long 🤯😂🤦🏼♀️❤️
I am so sorry to hear that Buckley 123. I hope it calms down for you and everyone else who suffers with it.
Kind Regsrds
It dose and then flares back up
I hope your wife finds some relief xx
Hi just-typing,
It’s lovely to see that your wife has you by her side!
I cannot find any information regarding lupus and eye twitching in The Lupus Encyclopedia. Eye twitches can occur due to factors such as stress (which can trigger lupus flares), anxiety, tiredness, dehydration, eye strain and drinking caffeine and alcohol. It can also be a side-effect of certain medication, it is advised your wife asks her doctor about this. Eye twitching can go away after 1-2 weeks without treatment, learn more about this at specsavers.co.uk/eye-health...
Please keep us updated, wishing you both all the best.
Thank you very much for your advise Chanpreet_Walia. Very much appreciated.
Kind Regards
Hi, it usually takes a couple of years to diagnose lupus because it mimics other types of diseases so they need to be sure. I felt the same way and whenever I asked my Rheumatologist she always gave me the same answer, it takes time. I don't know about eye twitches but I get them to, I think it's just a muscle thing maybe due to stress. I hope your wife feels better and tell her to write down all things that bother her or are new so she can talk to her doctor about it.
Sitting long periods of time 
Interested in finding out about how hereditary Lupus is
Occupational health and lupus query
Do inflammatory markers commonly decrease with age in long term lupus cases?
been waiting a long 7 years for a diagnosis!
