odd facial sensations
 

Does any one with small fiber have odd facial sensations. In the last few months, I have a pinkish/reddish tint on my cheeks and around my nose onto some areas of my upper lip (not exactly a rash-just a red, perhaps vascular issue) and it pulls....it feels like a facial mask. I do NOT like this. My ANA and other markers indicate autoimmune issues. I am wondering if this is a neurological phenomenon or 'something else'.

It does not appear to be rosacea, nor exactly a malar rash, but, it is like wearing a tight sock over my nose....ugh. Nose sock...yep, I am not normal.:eek:

I have a lot of Lupusy stuff. I am sure many docs would have baptized me with that diagnosis, high ANA, low C4 is very Lupusy. Well regardless, something weird is going on. This 'nose sock' is driving me nuts right now....well if I wait long enough, some new thing will evolve.:eek:

Skin tint!
 

You've obviously thought of SLE, but what about Scleroderma? We'll go for the 'big guns' here! :winky:

I try not to think about that one. Makes me nervous. I do have a mixed pattern ANA with speckled and nucleolar. It is quite high. Nucleolar is associated with Scleroderma. I don't have the Scl 70 at this point. Whatever I have is evolving. I am already on IVIG, so not much more that can be done, I suppose.

Yeah, trauma seems to start up a lot of this junk. I was in a head on years ago.

The nucleolar is 1:160 which is considered a + and speckled > 1:1280, then on another test, speckled >1:1280 with nuclear flrouresence seen which I think is the same as nucleolar? These tests were done within 3 weeks of each other. Labs only to to >1:1280 around here. I had an Elisa in Dec. 2006 which was 2.57 which was extremely high, so this has been going on a while.

I am neg for histones too, so it is not drug related Lupus.

Low C4 is not uncommon with all autoimmune disease. I have been running a low C4 for a long time. Now and then it is normal.

I kinda get to feeling like I will bite it before they ever sort this out (really sick)....then again, I really don't know what else they can do, other than real aggressive stuff, and I want more of a diagnosis before I start with that.

I think when you go to an academic center, they are compelled to make sure every I is dotted, and they don't diagnose very liberally. I see lots of posts with far less clinical substantiation then mine and they have a label. In some ways it is frustrating and in other ways it is good. I would rather get a solid diagnosis than a hunch, but it is taking time, and I am not feeling so hot.

Hi cylelops,
I have rosacea, and sometimes it does feel strange. Burning, tingling and tight. I notice that it does get more extreme and symptomatic in the winter and is worse at night. I've been tested for lupus a few times and it's always be negative. I've been dealing with the rosacea off and on for years, long before I ever got PN.

I don't see any reason that one can not have rosacea and elevated ANA as separate entities. I have no pustules or sores...just pinkness, and telangectasia. Technically, I meet the lab requirements for Lupus with the ANA and Low C4, but, it is typically a clinical diagnosis. My rash is not exactly malar.

Are you using anything for the rosacea?
The inside of my lower lip is a mess too, blebs and stuff, same with the tongue. Ugh. I must look like a troll.
Thanks for your input.

hi there

I think the best thing to do would be to go and see a dermatologist and have that rash biopsied. I have never heard of a lupus rash feeling tight, it would be more usual for scleroderma to feel tight, but then again with scleroderma there is not any discolouring (although my knowledge on scleroderma is very limited - I have sclerodactyl of the fingers along with my lupus but that is about it).

One strong feature of scleroderma is that the skin becomes 'bound down' ie you can't move the skin around with your finger, it becomes 'stuck' to the structure below it. Of course on parts of the nose that is normal (nostril area) but on the bridge of the nose you should be able to My understanding that it does feel tight with scleroderma.

If you get a biospy done, then you will get an idea of what is going on and possible a dx in terms of autoimmune process. When labs are not definitive, a biopsy can help clinch a dx.

hth

raglet

just an fyi - no, this is not the same as nucleolar, this is just the way they test the ANA (which stands for anti nuclear antibody). The flourescence is part of the way they make the count of of the ANA titre - I think it is about the ANA's flourescing, but don't quote me on that.

cheers

raglet

Actually, I am not currently using anything because the condition seems to flair up and then retreat again. For me it is annoying but so far hasn't reached the stage where I went in and got medication for it. I've kind of neglected some of my other medical problems while dealing with my PN and my hypertension. :(

Two different labs did an ANA within a month. One says nucleolar at 1:160/ speckled 1:1280, and the other finely speckled and nuclear fluorescence seen to 1,280...(seems rather confusing.)

The C 4 is low.

Scl 70 neg, SSA neg, SSB neg. anti-smith neg. This was basically what they did.

One test revealed an RNP getting near the limit but still normal.

C reactive protein is normal and high on one.

It is one of those labs you get that basically tells you something autoimmune is going on, but does not help identify it.

My lip biopsy is infiltrated with lymphocytes, and they basically said it was SjS based on that. I feel I am basically sitting in the undifferentiated connective tissue disease group. I guess I have to wait for it to evolve more.

I do have all the SjS symptoms and my mouth is badly inflamed right now. That is not the worst of it, the other stuff, constitutional symptoms, and PN are the thing that concerns me most....feeling sick right now.

Thanks for all your assistance.