Currently awaiting blood test results, but in denial.

[geordieshaun]

I'm brand new on the board today after spending a few days reading everyones posts in search of some answers. During the few days of good weather we had in May i came out in the usual rash on the tops of my arms but put it down to prickly heat, after all as a child i was told by my parents that's all it was. Over the years i've noticed it's taken longer and longer for it to clear up, so much so even today the rash is still there even though as you know it was the wettest dullest June on record! Strangely this year the rash has also appeared in places i've never seen before, forearms and now the right cheek of my face. They didn't appear at the same time too. The facial rash appeared only 3-4 weeks ago and the forearms 5 -6 weeks ago. I've never been able to go out in the sun because of what i have been told was prickly heat, and know if i'm out in the sun it triggers these rashes.

Now at this point i've never even heard of Lupus, and even today i'm in denial that it could even be, but the facial rash did send me to my GP. She was baffled and openly admitted this so i appreciated her honesty. She made me an appointment with a colleague GP who is a part time dermatology consultant at one of the hospitals in Newcastle. I saw him the following week by which time he's also reviewed my previous visits to the GP which were many for what seemed trivial things!

His first reaction was Lupus and booked me in for the blood tests which were taken on monday just gone and I'm due back for the results of these on Monday the 13th August. Now normally i wouldn't panic about these things but reading up on the condition does also seem to answer questions on my previous GP visits, sore knees, feet hurt when walking, Stiff neck, depression, lethargic, palpitations, occasional blurred vision that lasts for a few minutes then disappears to name some. I was also told 2 years ago (virtually to the day) i had asthma after an attack right out of the blue!

Finally although i have felt tired and lethargic for many years, last weekend was the first time i'd noticed a really bad spell coinciding with the rash. It knocked me out between saturday afternoon and two days ago when i just couldn't move. I did make it to work on the monday but was sent home where i then never left the bed until yesterday. The last week has also seen my night time sleep severely affected with restless sleep and waking up at several points in the night from 3am onwards. This kind of knockout has happened before, but it's always been put down to a bad virus or flu etc which at the time seemed extreme considering others in the family may of had flu but didn't react so badly!

I've read everyones experiences and advice on these boards, and i'm still denying it will be Lupus, but in a strange way i kind of hope it is diagnosed to finally have some answers to all the little issues that have plagued me for the last few years. What also hardens this denial, is i'm a 41 year old male, and i know that Lupus isn't as prevalent in men.

Perhaps i shouldn't be posting here yet after all it's not been diagnosed, but does anyone have any advice or wisdom they can share at this point in the process i'm following?

[Melinda]

I was diagnosed with sle years ago and more recently subacute cutaneous lupus (scle), lupus of the skin. Before developing scle, i had prickly heat in different places for three summers on the trot. Like you they took longer to go each time. I was told that there are 11 syptoms for sle, and if you have about five or more of these you classed as having lupus.

[Hidden]

Hi Shaun, sounds as though you are in limbo right now, which is not the best place to be.

Knowing is better than not knowing - but maybe your denial won't end there (it took me a couple of years to accept that I was 'properly' ill with a real disease).

Let us know what happens with your results - and try to stay positive - diagnosis, whatever it is, means that you can start getting the correct treatment, and that can only be good.

[nanny4 in reply to Hidden]

Hi Shaun,I don't have lupus but my daughter does,I come here to try and find relevsnt info for het.

This is a great place for info and advice ,my daughter is being treated with many meds a day, for what she was told is systemic lupus due to many many symptoms,including severe skin sores all over and heart valve and kidney scarring caused by something.

She was told 3 years ago before she got the bad skin problems that she may have multiple sclerosis,then she got the skin rash and damage internally and wad told last year that she had systemic lupus,now with all the problems and test results not quite right ,her diagnosis may change again,she now may have multiple sclerosis and discoid lupus.

It is hard for my daughter,she works fulltime,she has twin 3year olds ,but she won't give up the fight,she is fed up as her diagnosis seems to change,but luckily the meds she takes ,plaquil,methotrexate ,steroids,antibiotics and many more,are used to treat a variety of autoimmune diseases,and have helped her a Hugh amount.

She has regular,brain,spine, heart and kidney scans also blood tests on s regular basis to hopefully find out what is really going on on het body.

I hope you get some answers real soon ,keep a symptoms diary ,take photos of Amy rashes,don't give up,keep pestering doctors until you get some answers.

Take care,Sandy.

[Paul_Howard Partner LUPUS UK]

The time around diagnosis is very confusing and scary. If you'd like to speak to other men that have been diagnosed with lupus, please let me know. We have a few trained contacts who would be happy to chat with you.

Also let me know if you'd like me to send you any information.

Take care,

Paul

LUPUS UK

[Herb]

Hi Shaun, I live near you, Newcastle West. There is an excellent Connective Tissue Diseases clinic at Freeman Hospital with lupus specialists, if you do have lupus you are in the right place, you can ask for a referral. The dermatology department is at the RVI. If you get sudden blurred vision make sure your blood checked for the antiphospholipid antibodies, many people with Lupus have them and they need special treatment. the consultant will know about it.