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Nape of Neck rash
Dec 25, 2003
Hi. I'm wondering if having a rash at the nape of your neck (right in the back center, but in your hair) is a lupus symptom. I've been to numerous doctors and it has been shrugged off because of many negative ANA tests and low sed rate. I have many other symptoms (joint pain, electric shock sensation, slight dizziness, fatigue, itching all over with no rash, hair loss, etc. etc.) I've never had the butterfly rash on my face though. Thanks!
[QUOTE=Marisa68]Hi. I'm wondering if having a rash at the nape of your neck (right in the back center, but in your hair) is a lupus symptom. I've been to numerous doctors and it has been shrugged off because of many negative ANA tests and low sed rate. I have many other symptoms (joint pain, electric shock sensation, slight dizziness, fatigue, itching all over with no rash, hair loss, etc. etc.) I've never had the butterfly rash on my face though. Thanks![/QUOTE]


:wave: Hi.......I have the same rash and I was Dx with SLe on Nov 21, 2003 and since have had a dermotology appt and DR said this is a discoid lesion.......so...........dont know what yours is......but be persistent...my diagnosis took 7 years as ANA was neg all the time til this year .

KAthi
I have a rash on the front of my neck, it goes around the complete front. Each time I speak with my doc about it, it is ignored. But then again, so is the Lupus.
ANA positive one time, Anti-DNa another, been treated for it, but my GP still says that it is not it. My others doctors, hemotologist, Rummy and Orthopedic surgeon says it is also, but a GP says she is not sure. I have all symptoms, but what can a person do.

Thanks for listening.

Cleo55 in Yukon, Canada
Yikes Cleo!!

If you have an ANA and an Anti-DNA test positive, then you definitely have Lupus. I am from Canada also, and I had a heck of a time getting diagnosed properly (and I had a HIGH positive Anti-DNA). I would see if you can get a good Rheumy on your side here.. sheesh!

I have a rash on my face, but not on my neck. Marisa- you can have Lupus with negative test results. I just replied to a post (I think it was entitled something about nose ulcers lol) below. I wrote about test results there :) Take care you guys!

~Angelic
[QUOTE=AngelicBrat]Yikes Cleo!!

If you have an ANA and an Anti-DNA test positive, then you definitely have Lupus. I am from Canada also, and I had a heck of a time getting diagnosed properly (and I had a HIGH positive Anti-DNA). I would see if you can get a good Rheumy on your side here.. sheesh!

I have a rash on my face, but not on my neck. Marisa- you can have Lupus with negative test results. I just replied to a post (I think it was entitled something about nose ulcers lol) below. I wrote about test results there :) Take care you guys!

~Angelic[/QUOTE]
Hi Angela,

Thank you for your response. I was diagnosed in 1986 and went to see a rummy, he was not sure if it was or not, even though my Ant-DNa showed positive, a very high positive. My doctor here in Yukon, Canada says that both have to be positive at the same time, which I know is incorrect. I had every symptom of Lupus, from ulcers in my nose to being constantly tired, and muscle pain and joint pain. I even get a pimple in my left ear each time before a real flare up, same with the ulcer in my nose. I have had the rash on my whole body, now I get it on my breast, yes, breast, and the constant one on my neck. I hate the one on my neck, but nothing can be done about it. I just had a minor flare up before and during Xmas, but seem to be getting back on track. One day I guess a real doc will say yeah you have it. for now I am on the meds for it, but they really don't help me. The anti-depressants help, but that is it.

so what part of Canada are you in? Nice to hear from a fellow Canadian.

Thanks,
Cleo
YIKES Cleo!!!

I want to kick that Rheumy in the pants! You don't have to have an ANA and an Anti-dna positive at the same time.. I am glad that you know that!! If you have a positive Anti-dna then you have Lupus (as long as you meet the symptom criteria). The Anti-DNA is a far more specific antibody test for Lupus than the ANA anyway! It's really sad that people that have the positive blood work can't get diagnosed! MANY people that just have the symptoms go through a living hell to get diagnosed! And all they are waiting for is the blood work. Truth be known, not ALL people with Lupus have the blood work. 5% never have it positive, and all the rest of them are on their death bed and then its positive! I am glad that you know your body though. Would you travel away to get diagnosed? It's worth the trip, believe me. I went to England from Canada to find a Rheumatologist that would take me seriously. And I saw about 6 in Canada. So if you feel up to it try and get a second, third, fourth etc opinion until someone takes charge of your symptoms and gets you feeling better before something bad happens! It took me having Optic Neuritis and losing my vision for me to get serious about finding real help. These guys here in Saskatchewan farted around with me for a LONG Time!! Take care :)

~Angelic
Angelic..I just wanted to tell you how comforting it is to see how mant others went through hell to get diagnosed. Not that I wish them ill, but I always thought I was alone. I started having symptoms at puberty, in the late 70s-early 80s. For 4 or 5 years, my mother was told to take me to a shrink, because I had mental problems, or that it was growing pains, or that I was trying to avoid school and attention seeking. I had just about every symptom in the book. After a few years of this, I would have been happy with a Cancer diagnosis just to know I was not crazy. I was not until my Grandmother was diagnosed with Lupus that a lightbulb went off in my moms head. Sure enough....The Docs had ignored a super high ANA. Dingbats! :jester: She took me to my G-mothers Doc and he took one look at the rash on my face and knew right away. It kills me that other docs could look at me and my symptoms and rash AND the bloodtests and just blow me off :o . So all I can say to people is to be persistant! You know your body, and info is power. Keep going till you find a doc who will listen to what you say and take it seiously.....whew....thx for listening.. :cool: Carol





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