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Reality check

I have just recently been diagnosed with CNS Lupus after years of MCTD being controlled to a large extent by hydroxychloriquine. At first I was relieved I had a name to what was causing the new, odd symptoms but now I am beginnining to think about the past and the future

All those times I have felt fluey and was told I had a virus it was probably Lupus

I spent 3 years thinking I had ME

All the times I was so tired I couldn't function, it would have been Lupus

A lot of things make more sense now I am diagnosed but one thing I did have then was hope...

At least then I thought the flu would resolve or a good nights sleep would resolve the tiredness, now I know that these feelings won't go away....

I have been started on Mycophenalate and have been warned it could make me feel worse before it makes me feel better

Sorry if this is depressing everyone.....

So, what do I do?.... Same as always :) get on with it!

Try to change my outlook and make the most of the good days, be thankful I have a good GP and a rheumy and neuro I trust, and that so far work are being supportive....

And my daughter loves me :)

.... and I have you lot to moan too !! ;)

4 Replies

Hi Divadiva

Your post is not depressing, it's very positive & inspirational. Thank you for sharing. I too, was misdiagnosed with ME for many years, & my thoughts go out to all those people with it who never get any help. At least we are now getting the treatment we need.

May I ask how the CNS lupus effects you? I really hope the mycophenolate helps you very soon.


I started off with migraine, then noticed I was more clumsy than usual, dropping things and tripping up. My words would be in the right order in my head but not when I spoke them and sometimes they wouldn't come out at all! I felt light headed and dizzy like the sensation when you are in a lift. All this on top of the usual fatigue, joint pains etc. I also twitch, my eyebrows are a life form on their own. I am a terrible fidgit, never still. I was tested for Huntingtons Chorea, MS and a brain tumour before they settled on CNS Lupus


if it's any consolation, my rheumy STILL will not admit I have cns involvement, despite my GP, neuro & Psych telling him lol! Sounds like u got off pretty lightly (although it probably doesn't feel like it!) as I had audio & visual hallucinations, severe mood swings, psychosis, the lot with mine!

Still have problems with mine from time 2 time but no longer ready 2 stab people 4 looking at me the wrong way or believing I am, in actual fact, Wonder Woman ;)


Hi Dalediva

Just wanted to tell you that I've taken Mycophenolate for years and it really benefitted me, didn't get side effects when I started it either. I hope you feel better soon. It's good you've got a diagnosis, I'm still trying after 26 years.


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