Possible lupus ? Advice please.

[stacieann1989]

Hi everyone.

I guess I'm here for a bit of advice really. My doctor has told me they suspect I have Lupus. I have been having symptoms for quite a few years - fatigue, aches and pains, etc but I never suspected much of it ( I have three boys, so I just assumed it was being a mother that was wearing me down) but in the last year, symptoms have gotten to the extent where they are literally ruining my quality of life. This all came about by accident as well. I had never been to the GP complaining of my day to day symptoms, only symptoms like pelvic pain, and my periods stopping, which resulted in a surgery, where they found cysts on my ovaries and endometerosis (as if that wasn't debilitating enough!) Again after that diagnosis I assumed my other symptoms were due to that. However, unfortunately I had a stillbirth last year. So, a year on, I went to the DR complaining that m periods had stopped again, a total of eight months, when he went through my folder and asked me if I had a certain blood screening yet. I told him I had no idea what he was talking about, and he informed me that after the stillbirth I was supposed to have a screening of my blood because they found no cause of death on the autopsy of my son. He said I was supposed to be contacted four weeks after I gave birth to have the screening. (I wasn't) Anyway, I had the screening, not thinking much of it, until the dr rang me and said my blood came back lupus anticoagulant positive. I was told I had to have a repeat of this test in 12 weeks time. That's since been and gone, and again, it came back the same. I had a further blood test which showed an elevated appt level. I was given these results over the phone with no explanation. I got frustrated and made an appointment with my GP and asked for some clarity on the situation because i had been told about these results and then had no explanation or follow up. She rang a specialist whilst I was there who said she would like to see me with regards to my bloods. So, I've been booked in on nov 3rd at rheumatology.

Back to the symptoms I've been having - extreme fatigue, terribly itchy skin of a night time. Migraines. Recently I have been feeling terrible nausea on a daily basis, and so bad a few nights ago i was physically sick. I have bad aches in my legs and feet at night which stops me from sleeping. Talking of sleep, its all i want to do, even when I do sleep well. I have been getting numbness and tingling in my upper back ever day for the past six months.

Does anyone else with lupus suffer with these symptoms, or have had similar blood results. I'm being impatient really. I suppose I'll find out when I go for my hospital appointment, but my DR's really have been rubbish and given me hardly an inkling of clarity or information. By the way, I'm 25, I have three (thankfully) healthy boys and my husband is the only support i have really.

Oh, I forgot to mention, I've also been hospitalized twice this year with sever kidney infections, no apparent cause. Wonder if this could be connected?

Thanks everyone, and sorry for the length! =)

Take care.

[Samantha26]

I honestly have 85% Of the same issues you do. At 21 my son was stillborn due to IUGR at 8.5 months. I am now 25 and cannot get pregnant obgyn doesn't know why. My periods rarely come any more. Few years ago I had a teeeeerible reaction to the depo shot, only got it 3 times and stopped. Currently I have EXTREME fatigue, I need to sleep a minimum of 10 hours to function but prefer more. My hair is thinning out. I have hypothyroidism, but take my meds and levels are normal. I have dry, flaky, skin, and unable to sweat. Eczema but not on my face. Now have sebboric dermatitis and it hurt , flakes, and is so gross. I have fatigue all day every day no matter how much I sleep- some days worse than others. I get pains in my chest atleast 1week a month. Doctors say it's gastritist. At times i laydown and lungs hurt if i take too deep of breaths. I don't know. My vision is getting worse. At night I can hardly see at all. I feel my brain slipping, I forget what I'm saying, lose things, and get lost. My arms burn all the time and ocassionally my legs will burn and feel swollen. I get dizzy. Nausea. Feel like i have the flu 24/7. Have no strength. Just walking 20 miles wears me out. Struggle picking up things and simple tasks. Frustrated. Now have anxiety and depression due to all of this. Recently I quit my job and stopped driving. .... Do I have Lupus? I dont know, but I do have similar "early symptoms" like you to something. Please someone with Lupus give your input. DOES THIS SOUND LIKE LUPUS or is it something else???? I'm not right. Somethings wrong!

[stacieann1989 in reply to Samantha26]

Have you been to see your gp ? I feel for you, and so sorry to hear about your baby. My still born was only 5 months old, so he was still very small. xxxx Of course, I'm not a doctor, but, with m GP's testing me lupus, and i forgot to say in the post, he also said, depending on what the rheumatologist says, I may have to see a neurologist and check for Multiple Sclerosis (I'm praying it isn't) But he informed me the main symptom of MS is numbness/tingling/burning and swelling of the skin, also forgetfulness and confusion. It scares me, because every day, constantly, I walk into a room and forget what I was supposed to be doing, sometimes I'm in the middle of telling a story to someone and my mind just does dead and I forget what I was talking about, it's embarrassing sometimes. I'd definitely make an appointment with your gp and ask for some blood tests, even if they come back fine still asked to be referred to rheumatology or neurology because you believe something isn't quite right. You won't get anywhere with these gps if you don't ask. They'll just tell you your stressed, give you codine and anti depressants and send you on your way!

Sorry you're experience these symptoms to, it's so hard just to get through the day isn't it? Sometimes I feel like a burden to my family and children because I'm whining all the time and just don't do anything. Even doing the house work for ten minutes makes me want to fall asleep

Hope your symptoms improve, let me know how you get on in the future!

Stacey x

[Tinythepanda]

I'm so sorry for you loss and to hear your suffering with these symptoms.

The lupus anticuagulant test is what they test for APS/Hughes syndrome. A lot of your symptoms could be attributed to this.

I have APS as well as a lupus like syndrome amongst other things and can relate to a lot of your symptoms. The key is getting a rheumy who specialises in these conditions.

Its always a good idea to take list of what's been happening so they can get a clear picture.

Going through a diagnosis is never easy, but I hope you can get some answers soon.

Xxx

[AnnNY]

Sorry to hear you are feeling unwell, and on the loss of you baby. The test they did for you that was positive is called lupus anticoagulant, but it doesn't mean you have you have lupus despite the name. You still might have lupus, but that requires other tests and symptoms. LA is related to APS or Hughes Disease.

Here is a website with very good information on it:

hughes-syndrome.org/

There is a primary version of this illness, or it can be secondary to lupus. Miscarriage is sadly one major indicator. Your blood tests are another indicator.

There also is a good forum here for Hughes Syndrome. They can answer alot of questions.

It's hard to know there is something wrong with your tests and now understand what the problem is. If you check out these sites, you should be able to ask better questions.

Good luck.

[Freckle1000]

Hello.

Im the resident neurotic kidney obsessed person.

With multiple kidney infections and a possibility of an auto immune problem/Lupus - I would 'tell' your drs. to do some kidney function tests (blood & urine tests) just as a very routine check up.

The chance that you have a problem in this area is low but it's worth a look.

x

[stacieann1989]

Thanks everyone for your replies. It's good to know I'm not alone in all of this, and good to know there is support! I guess I'll just have to wait and find out what's wrong when I see the rheumatologist, although I have a feeling this is only going to be the start of what will be a long process!

Thanks again everyone x

[Rosemary76210]

You may want to refer to the Hughes Syndrome site on HealthUnlocked. The lupus anticoagulant is associated with Hughes or antiphospholipid antibody syndrome (APS), and fetal deaths are associated with it. It has to do with the blood clotting too readily and with medical help, may women have had successful pregnancies.