Can you sense if I have Lupus or what is wrong with my health?

I also posted this in pyschic before I came across health.

Hi Brera,

Welcome to Mystic Baord.

Lupus is often called the illness with many faces, the criteria of diagnosis is very hard too. Have you asked for or had blood tests? Have they tested for ana and anti-dna or anti-ro and sm?

Obviously only a doctor can diagnose an illness but there are many self-help organisations that can give advice and share their experiences. A very good one is http://www.thelupussite.com/forum/index.php?act=idx  which is the UK board of www.uklupus.co.uk
there is a USA one too,  and many all over the world http://www.uklupus.co.uk/lupuslinks.html

Read and learn all you can and go from there. If it is Lupus then its not the end of the world , there are many people that have found different ways of curing the disease themselves, after all an auto-immune response can be turned off

Best wishes and good luck, look forward to hearing from you xxx

Thank you for the support, I have been seeing a GI doctor for a year! And things are moving so slowly because my physician is very unproffessional and seems to enjoy making my and my family's life a living hell, and my Mom takes no action in switing her! But, I was supposed to go to a rheumatologist a month ago, but again, the doctors for some UNKNOWN reason have not finished the referal!! I'm trying to figure out what kind of lessons I'm supposed to be learning from this seeing as how I've been waiting in pain for so long now!

The only blood tests she has got are low CBC, but sometimes its normal, Anemia, and high SED...etc.

I really want to get more tests ASAP!!!! But I can't cause I'm only 15
And I am very sure I have Systemic Lupus because I have so many symptoms, even other complications that can be caused by it throughout my life...it also runs in the family, but hasn't for 2 generations.

Thank-you!

Hi I can totally understand your frustration with the symptoms and the necessary period of waiting.  I too at fifteen suffered horrible symptoms and pain.  It took 10 yrs for them to finally truly listen to what I had to say and finally diagnose my symptoms as an Auto Immune Disease known as Ankylosing Spondylitis.  If you have an Auto immune disease it does open up the possibility of another auto immune disease and comes along with a whole set of other conditions becuase of it.  Auto Immune diseases can not be turned off, gee I certainly wish they could but the truth is they can only quieten them down like a hibernation.  There are auto immune suppresants such as Remicade and Enbrel but these are used for severe cases and need stringent qualified requirements met before treatment is started.  any treatments that slow the immune system does have its dangers especially if the family has cancer in the genes etc.  Its often not a good idea to slow your immune system unless the diseases signs and symptoms outweight the risks.  

Also with Lupus there are different levels such as some that effect the skin mostly and then others that can effect the organs.

The truth is that with Lupus it is only diagnosed after a history of complaints as one test alone can not diagnose this condition.  so generally they will want reactive blood tests, symptoms and a history of the progress etc....Lupus also can lie dormant for some time hence it is undiagnosable so you do need to be in flare to receive dx.  

Just try not to let it get to you.  For so long I had doctors telling me the pain was all in my head and that I was too young to suffer crippling back pain etc....so after some time i started to think that maybe I was over reacting maybe I was complaining.  then it would become excrutiating again and I wouldnt be able to walk and I would do the rounds of the doctors again.

You need to keep a diary this is important and may help you get to an understanding of what you are going though.  Write down any symptoms you get each and every day.  Jot down anything you have done in that day that was unusual, anything you ate and what any pain may be like on a scale of one to ten.  Write down skin changes as lupus is very known for markings on the skin etc.  Write down also on a scale of one to ten your nausea, and your fatigue levels.  This way when you see a doctor you can take this with you to see if theres a  comon thread.

If you have any questions or would like to chat pm me as I have done these rounds for years.  I'm currently also being tested for lupus, I have a good rheumatologist and doctor who I see and regularly have bone scans and bloods taken.
I have a medical background having worked on ambulances and been an instructor also so should you wish to chat pm me and I can hopefully help explain any queries you may have.

Goodluck

Hi Brera, although it is very unusual to get a firm diagnosis at 15 for SLE or any form of lupus, with your history I would expect the doctors to be looking for it, but two generations ago lupus was a very serious disease, rarely diagnosed too, but now things are much better as we know more about it

High sed is a clue, but did they really not take any ana's or anti-dna's? that is strange.  You will need a rheumy's advice and also visit those sites I posted.

Personally I really don't agree with Angel saying  They can most definately, there is hope. But if we fall into the trap of becoming a victim to whatever disease then our bodies accept and stop fighting. Especially at such a young age you will find that hormonal changes will be playing a drastic part in your symptoms and like when going through the menopause, any disease can be worse at that time.

It must be very frustrating, but please don't worry, getting stressed will make anything worse, and yes, I know that saying that just makes us more stressed lol, but it also means we must rest and take care of ourselves. Diet can help enormously. You say you were with a GI doc, did you have digestive problems too? Many diseases symptoms can mimic lupus, so that may be a clue.

Have you tried talking to your mum again?