Possibly testing positive for Lupus.

[Eatpower]

Hi everyone, I'm new to this site and I would appreciate some insight just in case I test positive for Lupus. (I tested positive once for Lupus, but the NHS want to double check with another blood test)

So when I was a very young child I had very bad colic and I was always having reflux as a child and was quiet a poorly kid, as I got into my teens I was diagnosed with IBS (Irritable bowel syndrome) So it was a lot easier to manage, but when I turned eighteen years old back in June 27th 2008 after my sisters engagement party, I was so violently ill that night from one o'clock in the morning till the early hours of say six o'clock in the morning I was unable to get off the toilet and I was in absolutely agony and I was crying in pain. As the months went by I was very underweight I must of weighed nine stone so I went through a process of getting better again, but that evening left a massive impact on my health as the stomach problems remained so I kept going back to my GP and telling her that the symptoms remained and so by mid-2009 I was referred to have a gastroscopy by a Gastroentoroloigsit, which showed I had moderate Gastritis and Esophagitis So I went back and saw the Gastro doctor and he told me to take omeprazole but the tablets had no effect on the symptoms.. Through out 2010 and 2011 I just had to get on with the pain and think nothing of it, but by say mid Spring 2012 I was really unwell. I was unable to eat, my stomach was raw and my esophagus would shut when I tried to eat anything.. When I went for a bowl movement I discovered I was passing blood when I had violent bowel movements, I went on to see my doctor who referred me back to the gastro doctor and he then referred me to have another gastroscopy, when the day of the proceed came I was told I had Gastritis, Esophagitis and Multiple Peptic ulcers.. This shows that my stomach was getting a lot worse. Around the end of the year I was in a lot of pain and so my grandparents offered me their medication Solpadol which is codeine phosphate and paracetamol, I took some and by a click of a finger the pain would dissapear and I was so relieved, so I managed to persuade my doctor to prescribe me them which was good.

At the beggining of this year I was very unwell I was displaying these rash like patterns on my stomach I told my GP about them and she told me to take a picture of the rash like pigment, so I did. I was asked to have a specialised blood test to see what the cause was and my doctor told me it was a flare up of the blood vessels around the abdomen area where I'm always so swollen and bloated I phoned up the Doctors reception desk to see what the results were and they said the results were negative and I had also got a letter that same following week asking if I could have a routine blood test in twelve weeks time which was August this month. So I asked the nurse why my blood was being taken without purpose and she told me the blood test I had taken for the skin problem actual came back positive for Lupus, and I was very shocked and saddened that the NHS had kept me in the dark about this. This routine blood test was to determine now whether I had this disease or not.

So what I need to know is: Is this disease life threatening? What are the things I need to avoid? Is there any support out there? What do I do about the NHS keeping me in the dark?

My names is Travis and I'm 23

[kittykat68]

sorry to hear this travis ,i would start by getting a copy of your medical records as see for yourself what are being tested for , i know its all daunting and worrying lupus CAN be fatal however it can also be treated every lupus sufferer is different and your one of the lucky ones to get a quick diagnoises mine took 12 years and 4 biopsys, have u been told u have positive anti nuclear anti bodies ?? hope ive helped a bit

karen 44

[Eatpower in reply to kittykat68]

Well the nurse told me the first result to specialised blood test just came back positive for Lupus so I had to wait 12 weeks to repeat the procedure again, keeping in mind they were testing for a completely different disease and I believe it was Vasculitis. That's all I know.

[Purpletop]

Oh you poor thing - neither SLE nor Vaculitis are nice things to have but the good news is that they are manageable, although not curable. You may want to go onto the Vasculitis community forum too to find out more about that.

As for why the NHS is keeping you in the dark - I can only assume that the health service differs from hospital to hospital and some are better at communicating than others. Having said that, we all found that we have to take a very proactive role in our treatment if we want it done properly. So you will find it helpful to ask everyone who takes blood or does a test or consults with you about the reason for the test, when you'll receive the results, who will explain the results and when, what happens if your symptoms get worse in the meantime, who should you contact if you have any questions, etc.

Lupus UK (the charity behind this forum) has a great introductory pack suggesting ways of preparing for appointments etc. Their website is also informative if you want to find out more about what lupus means. Bear in mind, however, that lupus is a very 'bespoke' disease - we might share similar symptoms but not all of them nor at the same intensity, so before going into a mad panic about your future, start by getting your consultant to explain what degree of lupus you have, which type, what medication you need, etc.

By all means ask questions in this forum too - there are many young people like yourself going through similar experiences, so you will find understanding people listening to you.

There is a lot to learn at the beginning and you may find it all so bewildering but hang in there, you will get through it and find the right treatment that will help you lead a fulfilling life. Good luck.

[Eatpower in reply to Purpletop]

The tests for Vaculitis came back negative but some how Lupus did? Sorry for not saying that before, I was being vague. I really do appreciate the kind words you have given me. I have 100% tested positive as only one result came back and my GP must of thought it maybe a slip up and is hoping to see if the recent test comes back negative. Which it probably will be.

[Paul_Howard Partner LUPUS UK]

Hi Travis,

We have a free information pack which I would be more than happy to send you. It can hopefully help to answer some of your questions. Just send me a private message or email [e-mail] with your address and I'll pop one in the post for you.

Depending on where you are in the country, there are a couple of support groups specifically for young people with lupus (16-24). You'd be welcome to come along. One is based in London and the other is based in Cambridge. If you'd like more information about either meeting, let me know.

Best wishes,

Paul

LUPUS UK

[Eatpower in reply to Paul_Howard]

Hi Paul,

I sent you an email earlier this evening giving you my address details and also, I had some unsettling news on my recent results.