What symptoms can Lupus cause?

[Gymbabe]

I ask this because I am under a Nuerologist aswell as a Rheumaltologist , and I am not sure which of my symptoms point to MS and which to Lupus. But the more I read about Lupus the more I think Lupus could explain everything.

I have nerve pain which I take Pregablin for and now also take Another nerve pain killer which the Nuero prescribed, my brain is shot and I can no longer remember common words and if someone interrupts me mid sentence that is it I lose my train of thought. I also have bladder problems which I am now on medication for. I thought these problems were more Nuerological and even the Nuero agreed and has done a lower spine MRI to look for lesions to explain the nerve pain in my foot and bladder problems.

I just wish someone would but their hand up and say its X. The Nuero says you do not need a Dx as we can treat your symptoms, but then says I am on too much medication! The Rheumie after a year and 2 visits says its Raynards and mixed conective tissue, and on the 3rd 6 monthly visit look horrified to hear how ill I'd been and wants to put me on Hydroxychloroquine , but still waiting on the go ahead from the eye clinic. Not expecting eye clinic to say no as they said it was Nuerological, my circulation and now my age!

Sorry to keep asking questions but I am so confused.

[Purpletop]

You're right in thinking that lupus and MS can give similar symptoms, which is why it is difficult to diagnose either. But both can also co-exist, although apparently that is very rare. Your bladder problems seem to me to point more towards lupus than MS. If you're put on hydroxy and you notice an improvement in some of your symptoms within 2 months, then lupus is more likely. I disagree with your neurologist - the point is not to treat the symptoms but the cause, so I would definitely press the rheumatologist for a more substantial treatment for MCTD or lupus.

[Gymbabe]

Thank you for your reply. That's if I ever get my Hydroxychloroquine, saw Rheumie 12 weeks ago, rang secretary 2 weeks ago to chase it up, they had not had a reply from eye clinic would send another letter! Is it worth going to see my Gp and asking them to chase it up? Do not see Rheumie again until Nov and had hoped I would have been on Hydroxy a while then so we could both see if it was helping.

Rheumie told me I would see a specialist Rheum nurse to get my Hydroxy, is this normal? Also how do I find a Lupus specialist?

Although saying that no one has said Lupus to me.

I just want to get my head round it and try and get the best Drs and treatment so I can have the best outcome possible.

[Purpletop in reply to Gymbabe]

Yes, seeing if the GP could chase is a good idea. In NHS you do get a specialist lupus nurse that you discuss with your treatment and symptoms, so once you're on their books, you can chase them. I wouldn't wait 2 weeks, chase daily by phone or even in person, unfortunately who shouts louder gets the attention. As for the lupus specialists - do you mean privately or NHS? I would look at your nearest hospitals' websites, check out their rheumatologists' profiles and see what experience they have. Better still call up their secretaries and ask about whether the consultant has lupus experience. Even if you don't go private in the end, I'd call up their private secretary and ask, rather their NHS secretary, they would be more eager to help if they think you'll come in as a private patient. I know many on this forum go to the Lupus Clinic at London Bridge (private) or at St Thomas (NHS) but I've also been there and I didn't get anything that my local rheumatologist didn't already spot but then I'm seeing my rheumatologist under private medical insurance, not NHS, so I get to see him anytime I need, not every 6 months as per NHS.

I would see the GP and ask him to chase on your behalf but meanwhile do own checking of local specialists. If nothing happens within a week of seeing the GP, I'd go private to one of the local lupus guys or at Lupus Clinic in London and get your treatment plan that way. The NHS will then follow that plan from then n.

[Gymbabe]

Thank you for your reply.

Yes I do mean an NHS specialist, my local hospital Huddersfield has been advertising for a full time Rheumie for over 12 months. Saw 1 woman the first time who has now left, then the same locum the last two times. My first vist with her was a waste of time, just gave me blood test results my Gpmhad given me months earlier but second time she did seem concerned how bad I had got. Told her some days I am so stiff I can not put my own underwear on!

Just want to get started in the Hydroxy and hope it helps, sick of being so tried, its a good job my kids are no longer little, no way I could cope, now they are older thank god for the x box and the tv!

Can Lupus give you nerve pain? Been suffering badly from this and since I cut my medication its been bad again. My own fault but I've put on 3 st in the last year, and its getting me down, plus at just over 5ft is a lot and sure will not do my joints much good.

[Margot]

Hi,

I'm in the same boat neuro will allow me 3 short courses of steroids a year which usually help for a while. My rheumatologist is doing his best to find something help but so far cyclosulphamide has awful effects on the bladder so couldn't carry on with it and I'm not very optimistic that there's anything out there which he could prescribe but I'll keep pushing

Bladder problems are a big issue with ms didn't know they are common with lupus

[Gymbabe]

Margot, my Gp referred me to the bladder clinic, but you can self refer. It took 3 differant Meds but I am now on one which works.

I too knew bladder problems were common in MS, but it seems the more I read about Lupus the more things it seems to affect.