Not sure if I have Lupus

[Bekah4673]

Hi there I'm Rebekah, I'm 29 and I'm not even sure if I have been diagnosed with Lupus yet.

I have been under investigation recently at my fertility centre for recurrent miscarriages. I have had 3 in the last 12 years and was diagnosed with PCOS when I was 20. I always put the miscarriages down to that.

So I got in to a serious relationship last year and we're starting to think about having children. So I was referred to the fertility centre to have tests done and bloods taken. They were looking for things like genetic abnormalities, auto immune diseases, blood clotting disorders etc.

I got a call from the district nurse 2 days ago to say that I have tested positive for Lupus. She then went on to say that it could be a false positive and they want to retest me on the 8th of October. I am only too aware of what Lupus is as one of my family members has it.

I do have a few symptoms like fatigue and depression. Very mild joint pain only sometimes and occasional migraines with visual aura. No rash or weight loss. I am over weight if anything. I have read that recurrent miscarriage is also a symptom of Lupus.

Things that happened in my life are starting to make sense now. I was on holiday just a few months ago and I was sick as a dog the whole time. I thought I got sun stroke. No horrible sunburn but I felt like I was burning from the inside out. I had zero appetite and couldn't bring myself to eat anything but fruit and drink water. I was vomiting what little I managed to eat and drink and had awful headaches with chills. I was also so very tired and lethargic but once I was out of the sun, felt much better.

I am terrified for what this may hold for my future. I was not expecting this at all. I feel like I have just been handed a ticking time bomb. I'm just waiting for more tests to confirm or rule out.

So I may have prematurely joined this community but I was just wondering if there was anyone else out there with a similar story??

[Hayleyrose28]

Hi

It may be worth looking up Antiphospholipid syndrome (also known as sticky blood or Hughes syndrome). This is often linked to lupus and can cause recurrent miscarriages. I’ve recently tested positive for the antibodies, alongside my existing lupus diagnosis (but haven’t had any DVTs/miscarriages).

I also have PCOS - alongside other gynaecological issues - and my rheumatologist thinks that lupus can be associated with these conditions quite often. They are certainly linked with the hormones. I can also resonate with how you felt on holiday, it’s horrible isn’t it.

Try to think as positively as you can - I know it’s easier said than done, as I’ve only been diagnosed just over a year ago at 21. But I always think that if we have something like lupus then it’s best to know, and that way we can at least get treated and hopefully regain some strength. Sorry I can’t be more helpful, but hope your remaining tests go as best they can for you x

[Atibrat]

I was diagnosed with Lupus 10 years ago and was sick 2 years prior to the diagnosis. Like you in 2009 when I was diagnosed I looked back at things that happened that were probably related. I had terrible migraines since I was 30 and I had gotten ulcers in my mouth when I was in my 20s and 30s.

I wanted to respond because I have had it for 12 years and yes it is hard but every one is different and I have been lucky to respond well to plaquinel. Even if you do get the confirmation of the diagnosis, it is not necessarily a ticking time bomb.

I don't want to play it down because it is hard, sometimes more than others but many of us get strong and learn to make the most of life inspite of our disease.

Always here to talk if you need to.

Tammy

[Oshgosh]

Getting a definite diagnosis of lupus is a bit of a long drawn out process,inyexperience.

I’ve had different random symptoms for years,have been treated on a side motor m by symptom basis.

2 years ago I thought my asthma was going worse.

Last year had an emergency admission told I had NSIP. couldn’t understand why I was referred to a rheumatologist!now have a ups diagnosis.

My daughterhas3 children, she lost 3 babies in early pregnancy,then had her last baby 7 years ago.

She was told she had antiphospholide syndrome.

Sorry to ramble on, now 6 months into my lupus journey I am learning that the whole lupus thing takes a long time and see to be a process of exclusion some times.

Hope things go ok for you

[Oshgosh in reply to Oshgosh]

Sorry for predictive text,should have read symptom by symptombasis

[baba]

For more information

See hughes syndrome/sticky blood forum

healthunlocked.com/hughes-s...

ghic.world/

[Freckle1000]

Hi Beckah,

I've had ( SLE ) Lupus for 41 years. There definately can be false positives - but I'm pretty sure you're second round of tests will determine wether you have Lupus or not. It will definitely not take long for the Doctors to figure out wether you have it or not.

My mother had a false positive once and was told to go home and not worry about it again. She's now a very healthy 79 year old.

We all have different levels of illness - and for many of us it's a mild and very controllable condition - and the good news - in the potential bad - is if you do have lupus- medication will help put an end to those symptoms and you will start feeling better all round.

Miscarriages does go with the illness - but this is not necessarily due to antiphospholipid syndrome - which only some people have when they lupus.

I chose not to have children myself so I can't say - if youre diagnosed - and with appropriate medications and treatment wether future pregnancies might be more successful ?

Please don't be too frightened by it all.

X

[nanleighh]

Hi Bekah4673, It is a scary time when someone calls you with a diagnosis. I am an OB nurse and I am glad they are retesting you. Recurring miscarriage is one symptom of lupus but there are other things that can also cause miscarriage. Sometimes physicians think if you test positive for lupus antibodies that you have lupus but that’s not necessarily true. That’s a test for a type of coagulating disorder but the name of it is confusing and sometimes people with lupus have that clotting disorder as well, but many people with lupus do not have the lupus antibodies. If they suspect lupus which it very well could be, then they should send to to a rheumatologist or autoimmune specialist. There are 11 criteria of which you have to have at least four, and also you need to have an ANA and auto anybody tests and then if you meet the criteria then a rheumatologist can diagnose lupus. I know it sounds complicated and it is. It has taken many of us years to get a diagnosis , and some are even diagnosed without a positive ANA as they are so symptomatic, but that is rare. If they do find that you have the clotting disorder, then there is treatment available to help people have healthy pregnancies. I wish you the very best, and hope they get your situation figured out. Warmest regards, Nan

[Bekah4673]

Thank you everyone for all your kind words and advice.

I have to just wait and see what the 2nd test says then and take it from there.

In a round about way I would be glad of some sort of diagnosis as there are drugs to help me then. Nobody wants to have an autoimmune condition, obviously, but if it can help me finally have my family, I will take it and be thankful.

It's strange how things work out sometimes. Once I'm done waiting in Limbo I will give an update. Thanks everyone x