mild Lupus

[larissa]

my rhuemy thinks i prob have mild Lupus ! None of my organs are affected so i cant understand why he said SLE !!!???? my dry mouth may be to do with Lupus and my other symptoms - aching - fatigue etc could be down to my fibromyalgia or Lupus ! feeling confused !

[Jaxqueline]

Surely a blood test would confirm?

[Barnclown]

yes, the diagnosis process is confusing. when mine started i was told on forum that some degree of uncertainty isn't unusual, cause it can take up to 3 years of following your case before the process results in. my rheumy started out with a full detailed medical history and also a battery of baseline tests (heart, lungs, nerves, lots of blood tests) to establish where i am now. i think the idea is that everything that happens to me and gets tested from here on in is compared to those baseline results. gradually a picture of my version of SLE etc is revealed. it seems this happens this way cause often interpreting blood test results can vvvv complicated and take a lot of experience of lupus itself which not every rheumy actually has. and there seem to be loads of diagnosed lupus patients without clearly apparent positive bloods. and also there are all the conditions, often secondary, that we can discover we have: raynauds, sjogrens etc. well, a year into my diagnosis process, i guess i can accept the confusion more than i could at first. but this is a pretty complicated condition to understand, seems to me anyway.

well, for me anyway, it's great to have you here asking good questions and trying to understand all this. take care

[Joanna1]

I have only had the one mild flare 20 years ago and none of my organs were affected. Just aches and pains, hair falling out and fatigue. There are different serverity of lupus, and I know when I was first diagnosed, you do worry if you will get worse. Fortunatally, I have been very lucky although the fatigue never goes, hope things will stay the same for you. You can also get lots of information from Lupus Uk. Take care