[Emma0573]

Hi i was wondering if i could get some advice please, My gynae consultant has just sent me for blood tests for lupus, she says she suspects i have it from my history, (never occurred to me) and wanted me tested, the symptons i have are:
Endometriosis, Headaches/migraines, Muscle and joint pain and sometimes swelling, exhaustion, numbness in arms and hands, Ganglion cyst on base of my finger, Anemic, Chest pains, Mouth ulcers, Recurrant miscarriages(7), Deep Vein Thrombosis (in pregnancy), Asthma, Hayfever and allergic to certain medications, High Temperatures, Flu like feeling, Back pain and sciaticia, Bad memory, Brain fog and light headiness.

My grandmother had DVT, Discoid Lupus, Asthma and Hereditary Angio Neurotic Odema, My mother has also had DVT and my 13yr old daughter was dx with Henoch Schonlein Purpura (HSP) a month ago but that doesnt explain the mouth ulcers shes always getting.

What concerns me is: 1) How likely am i to have it because of my history and my families history ( is it hereditary?)
2) Is there ANY possibility that my daughter could have Lupus and not HSP
3) Should i mention all of this to my daughters consultant when i see him tomorrow?
4) What do i do if my blood tests come back negative?

Any help and advice is much appreciated
Emma

 

[Katharine]

Hello Emma and welcome ,

I'm guessing here but it sounds as if you're doc might be ordering tests for lupus anticoagulant in order to rule out APS or Hughe's syndrome. Another test is the anti-phospholipid antibody test. That would explain the problems during pregnancy and the DVTs and could explain headaches, and some other symptoms.

APS is not the same as lupus but can exist alongside it for many of us. The name "lupus anticoagulant" is slightly misleading as it does not diagnose lupus at all. The mouth ulcers, joint pain, headaches, brain fog, flu like feeling... could be indicative of lupus but also of many other things. Also when you have overlapping conditions it is sometimes difficult to know where one ends and another begins.

Both lupus and APS are auto-immune. That does not mean that they are hereditary as such but if you have auto-immmune diseases in your family then there is a higher tendancy to develop them so it should always be mentioned.

It is not something to panic about but just to be aware of.
With the symptoms you are having I would suggest getting a referral to a rheumatologist who could order more specific tests if need be. Unfortunately, and as you probably already know, diagnosis of such diseases is extremely difficult and can take quite a long time.

I hope that helps a little,
Katharine

 

[Emma0573]

Hi thanks for your reply, the dr wrote on the bloods form that she was testing me for Lupus, APS and Thrombpotenia or something like that like but she did say she thought i had lupus, im more worried for my daughter to be honest than myself especially as i have another 2 daughters as well.

Emma

 

[Katharine]

OK, well it sounds like she's being thorough which is good

I think that it is natural to worry about our children and obviously, as I said before, if you do happen to have any auto-immune disorder, it should always be mentioned to your daughters' docs.

I believe the hereditary element is only 5% which is reassuring.

My lupus and other auto-immune conditions obviously have a genetic tendancy as I am at least the fourth generation female in a direct line to have such problems. However, that is pretty rare. Most people here on the boards are the only ones in their family to have lupus and their brothers and sisters are also fine.

The good thing about knowing you have such a condition is that they would look for it earlier in your children and that would mean earlier treatment and hopefully less time with symptoms.

Katharine

 

[Emma0573]

Thanks for your reply, i think i will just mention it to my daughters dr tomorrow just so his aware.
Hopefully my GP will get my blood results soon, will my GP deal with me if my bloods come back positive?
Just that my gynae dr discharged me as i told her after the **** i went through with my last miscarriage i wont be having any more children and my husbands going to get the snip done she said she had no reason to see me anymore then, she didnt say that my blood results would goto my GP im assuming they will as im now discharged.

Thanks for your patience and understanding

 

[Katharine]

Most people are followed by a rheumatologist as it is very rare for a GP to have sufficient knowledge to treat auto-immune disorders beyond refilling the odd prescription and as a link between docs and in an emergency. Obviously, a good GP is still very important.

Asking the GP for a referral to a rheumy would be a good idea (especially as it does tend to take time to get an appointment). There is a find a doctor section here which can be helpful for finding a rheumy who specialises in lupus and other auto-immune disorders.

I presume that your GP will automatically be sent your results (he would here in Belgium) and I presume he is also aware of your medical history and symptoms.

Katharine

 

[Emma0573]

Hi just a quick update, saw my GP yesterday he said my full blood count results are back and ok, i asked why i still feel the same then as i did before i started taking my iron medicine and was told take the medicine then it wont hurt you, tried to explain that that wasnt what i meant that what i actually meant was that if if i still feel the same after taking my iron medicine then being anemic wasnt actually the reason for why i feel so ill and was told dont worry about it it will go away and you will feel better soon!!! (all i needed was a pat on the head)

I am so sick and tired of being and feeling ill ive been like it for over 10 years and really bad for the last 2 and half years (spent more time in bed than out of it) it just cant go on, explained about the blood tests the hospital have taken and was told phone the surgery in a weeks time and see if results are back if not they probably wont get them back and i will have to try and contact the hospital for them.

Upside my daughters consultant said that if i am dx with Lupus to let him know then he will test her for it, poor thing has been put on presnidone for a little bit to try and help her with the pain, hopefully it will work.

Thanks for listening to me vent and moan just feel more my poor husband needs a break from it! :hehe:
Take Care xxx

 

[Emma0573]

Hi i have just received my blood test results.

Coagulation INR-1, APPT-1 (0-20), (0-20)
Lupus Thrombing-15.8% (12-19)
Cardiolipins IgG-1, IgM-1, PROTEIN C-136% (0-20), (0-20), (70%-150%)
PE PS AT3-124% (80%-120%)

Ive been told everything is normal except for the last one which is slightly high and no follow up, so what does it all mean and what do i do now???
Emma xx