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Lupus SLE

(16 Posts)
Christmastreeohchritmastree Sat 25-May-19 11:17:21

So I have a diagnosis of lupus SLE. I was diagnosed 4 years ago after many symptoms like dizziness, aching, exhaustion, headaches and had positive ANA and DNA tests.
Fast forward to now and I am really struggling. I've been told it could also be other conditions but my specialist has been useless and not very supportive. I explained that I was off work as I'm barely able to function or speak some days and she said she advises to at least work part time. Trust me I'm very career driven and it has had a huge impact on me not working personally. I would love to go back to work.
Anyway i've been getting more neurological sympotoms like legs going numb, constant all over tingling, weakness, moodiness, shooting paints, face has a numb part constantly and pins and needles over the rest. Has anyone with lupus got similar or is it likely to be something else? I've asked for a referral to a new specialist but I'm scared of what these symptoms are.

Christmastreeohchritmastree Sat 25-May-19 14:26:36

Anyone?

Christmastreeohchritmastree Sat 25-May-19 18:50:32

One last bump

Laterthanyouthink Sat 25-May-19 19:04:11

Maybe lupus and something else? Autoimmune conditions tend to go together so maybe something like getting thyroid levels checked or B12 tested?

Lara53 Sun 26-May-19 08:02:38

You need to get full panel bloods done including reverse T3 through Medichecks and find yourself and integrative/ holistic doctor. GPs/ Endos are useless as they only look at things in isolation whereas you need someone to get to the bottom of lots of issues. I can recommend someone if you are in South East

Christmastreeohchritmastree Sun 26-May-19 11:23:16

Thanks both. I have had every blood test possible! Not South East unfortunately. Good advice though. I had a fill set of bloods done on Friday but I will check they have covered all of these again this time.

domton Sun 26-May-19 16:03:41

I have SLE, diagnosed about the same time as you. I was recently hospitalised for a stroke, one sided weakness, that turned out not to be a stroke, and is still under investigation. Nerve pain was my presenting symptom, and apparently unusual for lupus.

What meds are you on? I've just started azathioprine, that I was reluctant to start, but the joint pain was crippling and nothing else worked. I have been pain free for a month, and feel well!!

I am seeing a neurologist next month, as rheumatologist thinks it's not related to lupus, but that the azathioprine would help neuroligically if MS or similar.

I too was worried, but came to the conclusion that whatever they called it would make no difference as I would still have the symptoms regardless of the name.

I too have had loads of blood tests and scans, all reassuringly (or not) normal...last consultant said that he wouldn't worry, they may never find out what it was! Lol. This inevitably does not help and makes me worry more smile

I'm sure the neurologist will be more helpful. I'll keep you posted.

choirmumoftwo Sun 26-May-19 23:27:30

It is possible to have vascular and/or neurological symptoms with lupus. If you don't have confidence in your rheumatologist, I would ask to switch consultants. It's really important to have that confidence when you have a long-term condition.

Christmastreeohchritmastree Mon 27-May-19 21:36:43

Thanks everyone. Not on any meds at the moment! Again my rheumatologist said the possible side effects were worse than my symptoms, despite me being all over the place at the last appointment.
I'm happy I have been referred to someone else. You almost just want someone to say yes this is it eventhough really it makes little difference.

domton Mon 27-May-19 22:58:28

I understand totally. It's an odd feeling...I veer between I don't care what it is, it makes no difference, and hoping for the love of god someone tells me what it is.

You should be on Hydroxychloriquine as a minimum. Do you have a rheumy nurse?

Christmastreeohchritmastree Tue 28-May-19 00:55:12

Nope. Our hospital trust is shocking. The more I read the more I'm annoyed at how little support I have had to be honest. Hopefully the referral will come through quickly. My gp is lovely but admits to lack of in-depth knowledge in the area.

PerspicaciaTick Tue 28-May-19 01:33:38

I was diagnosed 20 years ago, was put on Hydroxychloriquine and felt a lot better very quickly.
I hope your consultant gives you some effective treatment soon.

domton Tue 28-May-19 07:20:11

Right. Taking Hydroxychloriquine is noir necessarily about making you feel better, but it's about controlling the disease as well and projecting your organs. Side effects are minimal for most, I have had zero side effects. It protects your organs from further harm Get a referral to another rheumatologist. I mean that in all seriousness. I bag little trouble when diagnosed, then about 2 years ago I got progressively worse joint pain that we could not manage. Joint pain that left me in tears and unable to even drive. This went along with a drop in kidney function.

Go on to the lupus UK website, and read. Everything. GPs tend to know little about it. You need to be aware. There's an excellent Facebook group called lupus UK sufferers. Get on it. The information there is Fab, and people will recommend you a rheumatologist in your area.

I'd push for a referral to neurology as well, that's probably s longer wait, so you'll have a better idea of what's happening by the time you get to see them.

Good luck cc

picklemepopcorn Tue 28-May-19 16:27:22

I'm sorry you've had such poor treatment!

Christmastreeohchritmastree Wed 29-May-19 20:04:30

Thanks all. I read the replies yesterday but then googled it and forgot to reply. To be honest it got me so angry and upset that I have just been left. I almost feel like my rheumatologist just thinks I'm making it up and as I have had normal bloods since she has just left me to it. Thing is though my symptoms say otherwise. She kind of lead me to believe if my bloods were normal then the lupus isn't active and my symptoms must be other things.

Christmastreeohchritmastree Wed 29-May-19 20:06:46

Sorry led not lead!

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