No further on

[Caljen]

For over 20 years now I have suffered with a reaction to sunlight, flourescent lights etc., and 5 years ago started suffering with joint pains, muscles weakness, torn muscles (without excertion),extreme fatigue, migraines, memory problems, confusion and slurred speech. I was referred to a rheumy and my blood came back as ANA positive but only border line and his dx was that I could possibly have SLE. I had been going to the clinic for five years before he referred me to a dermatologist who carried out a skin biopsy to check for skin lupus. I got the results back yesterday and it has come back as either polymorphic light erruption or another disorder beginning with (G) sorry I can't remember the name. Her suggestion was to wear factor 60 every day and to keep covering up and to come back in 5 months and, if the rash is present, she will offer me medication and light treatment. As I have been wearing factor 60 for the past two years, wear a hat on very hot days and always cover up this has left me confused. I recently went to Cuba and followed all the rules, Hat, longsleeved shirt, factor 60 but had to wear shorts and found that the rash didn't come out. So if my skin is only light sensative, surely in the Carribean it would errupt even more? Any way I thought this news isn't so bad, at least it means I haven't got lupus. WRONG! she said she couldn't confirm that as she was only a skin specialist. I explained about all the other syptoms and again she said she couldn't help and to go back to my GP. So basically I'm back to sqaure one, with a GP that doesn't know enough about Lupus and a rheumy that appears to have wiped his hands of me.

[KayCee31624]

Hi. I just read your post. I can understand how you feel. Sometimes it takes years to get diagnosed with Lupus, unless you are fortunate enough to get a doctor that will listen to you. I know this was the case with me. I went for years and years going from one doctor to another and nobody would take me seriously. They would note the Dishydrotic Eczema and decide well now that is the culprit and it wasn't. I did not even get to see a Rheumatologist until I was 36 years old, because no doctor would refer me to see one and they would tell me that I was worrying needlessly. It was not right at all. When I finally got a doctor that listened to me and did not get sidetracked by the Eczema he took the tests for Lupus and listed all of my symptoms and dx SLE. He immediately referred me to a Rheumatologist who said taht I have one of the most classic cases of SLE that he has seen in all the years of his practice. He also dx me as having Sjogrens Syndrome overlap. He put me on medication immediately and got me under control. In fact the Rheumatologist told me that he believes that I have had Lupus since I was 5 years old when I started getting mouth sores big time. It is a shame that the doctors will not listen to female patients more.

Hugs,
Kathleen

[Caljen]

Hi Kathleen

Thanks for your reply. I have calmed down now after speaking to several people and managed to put things into perspective. I took the bull by the horns this morning and phoned my GP. I've made a double appointment with a female doctor so I can take my time and discuss my symptoms with her and hope we can take things a step further and sort things out. This site is a god send for me, it makes you feel you are not alone and not going round the twist. Hope you are well Hun.

Much Love Cal xxxx