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Hi VeeJ,

Thanks for your comments, in answer to your questions yes for a good 10 years or so now I have found that when I go in the sun the tops of my eyelids go bright red, I have never worried to much about this I just thought it was skin pigments? however since I have been feeling ill this last 9 months I have researched my symptoms and I have seen photos of this with lupus suffers it comes under the Discoid rash (raised red patches) heading, but because I never reported it to my GP they don't belive me. Then a few weeks ago my fingers on my left hand went a grey/black kind of color which I did go to my GP with who had not got a clue what it was? I told her it was a lupus rash and because she could see this, its what got me my referall to see a Rheumatologist.

Previously my problems were what I could feel nothing thast they could see??
I have never been a person who worships the sun I go on a sunshine holiday may be for one week a year previously, until 2004 which is when I split up with my daughters mom, I brought myself a convertible car and started to go to Spain, Mallorca for long weekends with some friends quite regular so hence I got more and more sun exposure. I did notice a couple of time that my eyelids went red but because I was feeling well in general, because I changned my lifestyle I went to the gym 3 or 4 times per week changned my diet to loads of fruit, veg, meat and fish and I lost a stone in weight I felt better than I had done for years, apart from toe odd swelling up of my ankle every now and again I ignored them.

I did have a problem with my back In 2004, when I woke up one morning and I was in pain in the joint at the bottom of my back in the left side, it gradually got worse as the week went on to the point that I was in pain just trying to put the clutch down in my car I went to my GP who said what have you done I said absolulty nothing at all he said you must have done something I said no I have done nothing at all that I can remember. He gave me some pain killers that did nothing I went to see an osteopath for six weeks until it felt better again. I still get pain in it every now and again then disapears again, in fact only on Wednesday I woke up in pain with it but It had gone come yesterday morning.

I think that both my arms are scared from the middle of the top of my arm right down to my hands were they have been exposed to the sun. I did go and see my GP with what looked to me like disc shaped rashes on my arms they were faint but there she Just shook here head and said she thought it was an alergic reaction to something. I suspected lupus then and got her to the ANA which came back negative. I also showed her the back of my tounge which has a line of 6 ulcers on it I noticed them when I was brushing my teeth one day I have no idea how long they have been there they dont hurt me at all so she said just ignore them? that was last December and they are still ther now.

I have never had a great deal of energy people have always said to me for a youg guy you don't half get tired easily, somedays are better thanothers but I just thought it was the way I was I never once thought that there was something wrong with me until now that is. I have lived a pretty normal life I was still going out to night clubs reguarly until last year, I work for my self work long hours, look after my house do my shopping wahs ing ironing, etc have my daughter stay with me 3 times each week went to the gym 3 times a week and went out 2 nights each week I felt great altough often stressed and tired, thats because of the aggrevation with my daughters mom. That was until Feb 2005 when I had a flu like illness sore throat, runny nose, sneezing, headache and then I felt so, so, dizzy then my left arm went tight and numb just like I was having my blood pressure checked this lasted a few hours. My GP said I had the flu and a trapped nerve in my elbow? The flu symptoms lasted a few days then disappeared the dizzyness hung around a few weeks off and on then disappeared.

I went back to being Dave again, back to the gym by this time I had lost nearly two stone I went down to 11 and half stone my target was to get to 12 stone, but after that I could not stop loseing weight I put it down to my busy lifestyle and how healthy I was eating and my exercise regime. My friends were saying I was too thin and one said you look ill? but some weight back on.

Then in July 2005, I had out of the blue what I can only describe as an attack, the dizzyness returned with the headaches, then my left arm went numb again for a few hours and I had a very upset stomach togeahter with the heart palpatations and the gasey stomach. I have had heart palpatations for 10 years my GP checked me out then and all my tests were normal so he said just ignore them which I did they come in spasms for a few days then disappear again for a few months then come back again. I also felt tired.

I saw my GP who said You have an ear inmbalance and a trapped nerve in your elbow this alarmed me I know this could not be right. My Blood Pressure was raised so he sant me for loads of blood tests which came back normal. I then noticed other symptoms my calf muscles and my left tricep muscle kept twitching on their own my forearm muscle were aching just having a shave and my biceps muscles were hurting just putting hair gel on my hair. I felt like something was running down my face but there was nothing their. I became forgetful and confused I locked myself out my house and took two lots of pain killers within an hour of each other because I forgot I had taken the first lot...........this just is not me at all. I knew something was wrong so I started to research my symptoms, I wnet back to my GP and demanded blood tests for B12, and to see a neurologist, I had an MRI brain and spine which was normal he diagnosed me with stress and anxierty the IDOT!!! So because he said all my family and friends belive it and try to make me go out when I feel awful!!!!!!!!!!!!!! beacuse they just dont get it. I notice some days how my legs just vibrate I also get the pins and needles all over my body.

I feel 90 times better now but still have symptoms most days they come and go, I have had to reduce my hours at work, I have had to stop going to the gym which means I have put over a stone and an half on in weight, it takes all my strengh to get to work most days put some days I almost feel like the old me again and I think great lets get the gym but its a false dawn, becasue the next day the symptoms are there again. One days its my elbows aching the next day its my back then my ankle will swell up for a couple of days then the next day its the muscle twitching then the next days its my muscles aching. The whole thing is crazy, I got copies of my blood tests from my GP for the last 2 years and ESR is always high, as is my rhematiod factor positive and my lymph count is always low.

I know I have LUPUS i just have to prove it to the medical world, well I have got my rhumatologist to do the specific tests now the antii DNA, etc, etc, and hopefully I have some news in the next month on what they say but I would not be surprised if they are not 100% conclusive, like you say I think the tests become positive the more the disease progreses, you need the treatment now to stop it progressing not once its got quite far and done damage to your body. Whatever the result I shall keep fighting on until I get a result that makes sense to me.

I held my father as he died last Thursday and his funeral is next week im trying to keep myself from being stressed out so I dont get another attack, wish me look.

I hope your having a good day today, take care.

Dave.





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