Worried pre diagnosis

New diagnosis and before diagnosis
1

Hi guys,

New here…little backstory.

I already have lupus SLE diagnosed 15 years ago. For the past 5 years I’ve been experiencing some very odd symptoms…fizzing (as I call it) in my hand, feet and lower legs, aura visuals no migraine, shooting pain in neck and down back (hurts like hell), cannot tolerate getting too hot, increased reflexes when tested, tightening around waist like I’m being hugged to :skull: and my legs and arms feel slow and useless.

Anyway, for 4 years my docs rheumatology and GP haven’t listened to me about these episodes. They blamed it on the lupus or other things but I’m adamant they’re not as trust me I know lupus far too well. And if it is it’s a worsening of lupus which needs treatment.

Anyway I finally went to a new GP who listened to me, did a physical exam, found my reflexes are all over the place, balance is off and eyes move slowly. She rang neurology straight away and got me an urgent MRI which I’ve just had the appointment through for. The neuro and GP both mentioned MS and said I should prepare for this as a diagnosis.

Question is…has anyone been left for years with symptoms and then got a diagnosis and if so, what should I expect? I’m nervous about the whole thing.

Thanks all
Cass

2

That would be rotten luck for you. Auto-immune mess-up conditions do tend to cluster a bit and the idea of playing auto-immune bingo does cause some grim amusement on here from time to time.

Well done, sticking to your guns. I am glad that you have found someone to listen to you and do the necessary. You’re not dx with MS yet, so I don’t want to jump that gun any more than you do, but if you were to be diagnosed with MS, I guess it would require some good liaison between the rheumatologist under whose care you are for lupus and the neurologist as they figure out the best way to manage both conditions in parallel. Not a very appetising prospect, admittedly. Well, let’s hope it doesn’t come to that.
Good luck with whatever comes next.