[skully]

Hi,

I'm a guy who has just been diagnosed as having Systemic Lupus. I am waiting for a blood test result to confirm, so I guess its just a strong guess from the specialist right now?

In a bit of a daze. Had never even heard of this before. All my symptoms seem to match what is written on this site, but I still can't take it all in.

Was everyone else diagnosed post-blood test?

Wow, not really sure what else, my head is spinning. Just need to chat through with someone.

S

 

[Katharine]

Hello Skully and welcome

It's difficult to answer your question as diagnosis can be so different for many people. In fact many wish they could finally get answers without the blood test backup. Some people go for years without diagnosis as certain docs will not even consider a diagnosis without the bloods to support it. Unfortunately some people (admittedly few) are negative on bloods, especially the ANA test which is used for screening auto-immune diseases.

If you have been given a diagnosis without blood tests then it means that your symptoms are obviously pretty clear (and perhaps severe?) and that you have a good consultant. That is especially true as you are a man and many consultants will kind of go "nah, can't be lupus, only women get it". That is, of course, very wrong but women do outnumber men 10 to 1.

I'm sure that your head is spinning. It's not easy to be told that you have something like lupus, much less when it is unexpected and you have never heard of it.

The people here are great and will all help you to get your head around this disease as much as they can. Feel free to ask questions and to run through how you're feeling.

bye for now,
Katharine

 

[skully]

Thanks Katherine.

I was just diagnosed today. I've been feeling really tired for a long time, have been taking anti-depressants and have struggled with what was initially diagnosed as psoriasis, but didn't respond to treatment. Then I developed a leasion on my lip which flares up and blisters when exposed to the sun. Went to the doctors earlier this week (for something else) and was told I had abnormal Kidney function results. Completely seperately today (after months of waiting) saw a specialist at a dental hospital re: my lip which was originally diagnosed as lichen planus, but did not respond to treatment). He says that he thinks I have SLE and has taken further bloods to clarify. I have been out of work since March (concious decision to leave large corporate job) and am now worried about the prospect of returning to employment.

Its just all a bit mad. Trying not to get overly concerned in case its a mis-diagnosis / mild form. Just not sure what to think. Its been a long while snce I felt myself.

Good to know that there is a strong support group.

Thanks.

 

[Katharine]

Hi again,

It is best not to give in to panic (just in case you are that way inclined :wink2 but to inform yourself from reliable sources. This forum and the website attached to it are great places to start. There is also good information on reputable hospital sites such as the London Lupus Centre, the John Hopkins site, St Thomas's hospital in London as well as the the Lupus Foundation of America site.

Other than that, we all learn to take things one day at a time. It's an important lesson for many things in life but in a society where people are often pushed to plan ahead constantly it is not always that easy to do.

When reading through this site, please bear in mind that the people who post here are not representative of the entire lupus population. Many lupus sufferers are out there getting on with life and don't have much time to come here. Most of the regular posters here are people who are not yet diagnosed, those who have just received diagnosis or the rarer more severely affected people.

Try not to worry right now about going back to work. I know that feeling of not being able to cope with what is being asked so well. Focus on seeing your specialist again (was it a dermy or a rheumy you saw?) and on starting treatment. There are several treatment options and, once you get the disease under control, things should start to look very different for you.

The meds do sometimes take a while to take full effect but you have to keep in mind that you will get there and things will get better.

Katharine

 

[Zoi]

Hey Skully and a big welcome to the forum!

There are a lot of lovely people here as well a wealth of information. I do hope you find the forum useful. Katharine has already given you excellent pointers indeed!

I just wanted to extend the welcome and to say that not being sure what to think at this point is, I think, very normal. It would be rather strange if you were feeling calm, collected and sure about things on the same day as a lupus diagnosis.

Do try pacing yourself a little bit until you hear back from the doc about your tests and maybe try thinking about it this way: a lupus diagnosis might just be the first step towards getting the right treatment and feeling like yourself once more

Are you being referred to a kidney doc about your abnormal kidney function results and/or to a rheumatologist for your lupus?

Take care,

:flowery:

Zoi

 

[onetay]

hi skully,
It is always hard to think you have something that will change your life. I have sle and it was done with a byospie. The one thing about this site is that the people are great here and so supportive. I hope that you are fine but if not we are all here for you, you are not alone nor do you have to do this alone. I had not heard of lupus before I was dx either and no one in my family had either. It has been hard for my family and friends to understand the lupus. If you need someone to talk to just send me a message.
Tammy