Recently diagnosed

[Jojo978]

I've recently been told I may have Lupus, waiting for confirmation from my specialist. Tbh I know very little about it. I have severe pain in both my ankles, everyday in agony and every night in tears,,,,,

[charlotte_g]

Hi Jojo978,

I’m so sorry to hear what you have been going through. Have you experienced other lupus symptoms? I was diagnosed fairly recently as well, so if you need support this has proved to be very helpful for me already! If you have any further questions I’m sure someone on here will always do their best to help answer.

Good luck and hope you get the help you need in order to begin getting better.

All the best,

Charlotte

[Jojo978 in reply to charlotte_g]

Hi Charlotte,,up to now just the pain in my ankles I think??? I'm not sure, after reading symptoms I suddenly started thinking but I don't know if that was my mind running away,,,,,, over the past year I've put alot of weight on, and looking back that is when my feet started to hurt but was very hit and miss. I feel alittle scared, as I don't really know much about Lupus, only what I've read. I have many questions,,,, will my life change,, can I die from this,,,,, x x x

[charlotte_g in reply to Jojo978]

It is completely natural to feel scared. I had never even heard of lupus before my diagnosis and I’ve already learned so so much, so you will for sure start to understand everything much easier soon.

Even if you only have a few symptoms it’s never a bad idea to get tested, just incase so if there is a problem, you can get the treatment and support you need.

There are so many factors that can affect the questions you are asking as there are many different forms. And I’m sure so many of them will be answered by your diagnosis.

Do you know around when you are supposed to find out the results? The waiting much be very anxiety creating xxx

[Jojo978 in reply to charlotte_g]

I have an appointment with my specialist on March 18th, I've gone private as we have health care with my husbands job. This will be my first consultation, very apprehensive,,, what other tests do they do?

[charlotte_g in reply to Jojo978]

It’s good you have an appointment rather soon!

I was in hospital so I wasn’t aware of exactly what tests they ran at the beginning (It was a lot though - they were very thorough). If they haven’t run any tests, I assume they would do an ANA panel (finding out which antibodies you have) and a Full blood count (how it’s affecting your body as well as a big indicator as if you have inflammation in the body).

But I think it also depends on what form of lupus a person has, for what they are tested once diagnosed.

[Jojo978 in reply to charlotte_g]

I've looked at my referral letter from my doctor to consultant, it says I have ANA titre 1/320.

Do you know what that means? X

[charlotte_g in reply to Jojo978]

The ANA titre is a measure of autoimmune reaction in the body, but on its own it isn’t diagnostic. I think people can have a high ANA but still be healthy. I’m not sure whether yours is high but mine was 1:1260 (when I was diagnosed). X

[Jojo978 in reply to charlotte_g]

Thank you for listening x x x