[mindyandy420]

Is it common in to have or get rashes with NPSLE? I dont have any rashes or anything like that. I dont think I ever have. I have cognitive issues and nervous system issues. I dont know yet if MS or NPSLE or APS. Waiting on tests.

Thanks
Mindy

 

[Lily]

Hi Mindy,

Each of us with Lupus is affected differently. I personally get rashes with my Lupus, I also have other organ involvement besides my brain.

But no I would say it isnt essential to have rashes if you have SLE with brain involvement. Most Lupies however get some kind of joint problems, no matter how the Lupus manifests in them. Only around 30% get skin problems I think though.

When I was being investigated for Lupus/MS/Sjogrens/APS my livedo reticularis was very prominent (still is when flaring). It didnt really help them that much because you can have it with all of those conditions. I was surprised that you can have it with MS but my Neuro said he had seen it sometimes.

love
Lily

 

[mindyandy420]

understood

I do understand that it effects everybody differently. I dont have livedo reticularis or joint problems. I did get some blood work back today.
DNA
IgG
SSA
SSB
SED Rate-good
All negative
I wont get all the others for about 2 weeks.
So far it looks good.

 

[Raglet]

put it this way, it would be pretty unusual to have npsle and have no other symptoms of lupus (as lupus is a systemic disease) - but whether or not your additional lupus symptoms were skin, kidney, joint or whatever is very individual.

When my NPSLE flares then the rest of my lupus flares along with it, so I get vasculitic rashes, joint pain, etc etc. Just life with a systemic disease, when the disease revs up it tends to rev up in more than one part of the body.

hth

raglet

 

[halfpintfl]

Hi Mindy, I'm very happy for you that all your tests have come out negative so far, that is a good thing. It is true that lupus affects us all differently, but in a flare, it's usually "every hurt for themselves" so to speak. It's never one thing, its usually several. Anyway, do take care, and be well.

 

[mindyandy420]

thank you very much for your support

I thank everyone for the support. As each and every one of you limboland is no fun. I am leaning toward MS.....but I dont know. Like I said I dont have joint pain or any pain, I dont have rashes even during my flare, I dont have livedo reticularis, I have been tested for kidney and liver all fine. Not that I'm ruling anything out. I only seem to have nervous system problems.

I do have tingly, pins and needles, burning, spacticty, muscle twitches, vibrating feeling, slurred words sometimes, and brain farts so to speak. LOL

I will keep you all posted.
I go in for the EEG and some other test the 21st.