[Shadow girl]

Hi. I'm tying myself in knots (metaphorically) with whether I may have lupus or not. I know my Rheumy is considering the possibility by the questions he asks and the tests he's done, but when I read some of the posts on here I realise how mild my problems are and I feel bad for being so impatient to know what I'm dealing with.

The last lot of tests showed raised ESR, CRP, low lymphocyte count and polyclonal increasing immunoglobulins. X rays show nothing. MRI showed 1 mild slipped disc. I've had bad headaches on and off for 20+ years, I've had recurrent depression since my teens, and constantly the last 5 years. For the last 12 months I've had pain in my back, ankle and other joints at various times. I have a livedo reticularis rash.

I am ANA, Rheumatoid and CCP negative.

I now have a foot problem as well, plantar facilitus (or something like that) which means I can only wear crocs if I want to still be able to walk in the evening, and I've been getting cramps not just at night and not just in my legs.

I had a bone scan earlier this week, and I'll get my results on 21st July. My thought is, could an infection cause all this and it not be anything long term at all?

 

[Lily]

Hi shadowgirl,

Do not allow yourself to feel bad just because you don't know exactly what's going on yet and that you think many people here are much worse off :hug:

This website is not typical as far as Lupus goes, it is made up of the more severe and hard to treat cases, those who are having difficulty with controlling things right now and trying to find the right mix of medications and those just like yourself that are being investigated.

There are literally thousands of people with Lupus out there that have no need to visit and are well controlled on medications and living their lives.

Remember at one point many of us were where you are now - unsure of whether we did or did not have Lupus. They say on average that once investigations start it can take around 3 years for many patients to get a firm diagnosis. Especially if all the bloodwork and symptoms don't fall into place immediately and often they don't. Inctredibly frustrating and a time of turmoil, so that's what we are here for, to try and support you and help in any way we can.

I doubt that the Rheumy would be still running tests and doing followups with you if he thought this was just some kind of virus. Besides you have many things going on that don't fit into that category and a year is a heck of a long time to have a virus

If you need to let off steam then feel free, I remember myself just how frustrating the waiting and wondering was. But if it is Lupus it will eventually show itself and it's good that you have a Rheumatologist who is keeping an eye on you. Many people get fobbed off and are left to fend for themselves until such time that they get extremely ill - that's not a desirable situation.

love
Lily

 

[Katharine]

Hello and welcome

I don't have anything to add really to what Lily has said apart from welcoming you here.

It sounds like your rheumy is being thorough. It may be some time before you know exactly what's going on but having a doc that is listening is one huge step.

bye for now,
Katharine

 

[greenheart]

HI SHADOW GIRL,IM FROM PETERHEAD SCOTLAND, i too have cramps in my legs and pain in my ankle and have sufferd with depression for 9 yrs which is when my periods completely stopped i was 32 at the time from that moment i have never had a pain free day the pain makes me cry and i dont think im a wuss, i have 2 grown up kids with each pregnancy i had phnumonia sorry about spelling the last last episode was the yr 2000. the pain i suffer is in every part of my body, the worst thing is i have had yrs of people thinking im mad maybe im paranoid. take care keep intouch xx anna