It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-09-2003, 12:01 PM   #1
Newbie
 
Join Date: Aug 2003
Location: Pueblo, Co
Posts: 3
SonyaParker HB User
Angry Hellllllllp!!!!

Hi everyone, My name is Sonya I am 27yrs old and had a test that said I was NNA posstive for Lupus. I had this test 3 months ago and havent went back to the Doctor cause I am scared. I am loosing some of my hair in patches I itch all over, I get numb on my hands and feet... and I have a rosey rash on my face that goes away but comes back if I am in the sun to much. my joints also hurt but the doctor wont let me have anything. I can sleep for a week and still feel like I havent slept at all. I just dont know what I should do.. if anyone has any Ideas please let me know... thanks bunches.
Sonya.

------------------
Sonya Parker
__________________
Sonya Parker

 
Sponsors Lightbulb
   
Old 08-09-2003, 03:37 PM   #2
Senior Veteran
(female)
 
Join Date: May 2003
Location: Virginia, USA
Posts: 2,354
BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User
Post

Hi, Sonya,

I'm 52 and was diagnosed with lupus 4 years ago. You are not alone.

The symptoms you describe of losing hair, rash, red face, and fatigue all are lupus-type symptoms. Lupus is difficult to diagnose. It is one of several "auto-immune diseases" and it often takes several tests and time to figure out which auto-immune disease you may have.

Arthritis is the main problem for many people with lupus. Some people have worse problems from lupus. Your doctor has information that can make lupus less scary for you and, if needed, medications that can help handle your symptoms. The doctors will help. The type doctor that helped me most is called a rheumatologist (arthritis specialist).

As you've noticed, being out in the sun makes the redness on your face worse and it causes increased fatigue, too. It is essential that you stay out of the sun as much as possible. My doctor told me I could walk from a building to my car, be outside briefly on cloudy days if I wore a good sunscreen, and not to ever plan a day at the beach.

Lupus is a bother, but the more you know about it, the better you can care for yourself and the less afraid you'll be.

I encourage you to go back to the doctor so you'll get the medical information and help you need. Lupus will be worse if you stay away from the doctor's help. On Monday, call for an appointment!

I wish you well, Barbara
__________________
Betty

 
Sponsors Lightbulb
   
Old 08-09-2003, 04:12 PM   #3
Newbie
 
Join Date: Aug 2003
Location: Pueblo, Co
Posts: 3
SonyaParker HB User
Wink

Thanks Barbra, I know I aint the only person out there, but it is still scarry... I will call on Monday and see what they say I know I need more blood test But I am scared of Needles.. boy oh boy if I ever get really sick lol...
thanks again hun.


------------------
Sonya Parker
__________________
Sonya Parker

 
Old 08-10-2003, 12:16 PM   #4
Member
 
Join Date: Oct 2002
Location: va,usa
Posts: 57
shasha HB User
Post

hi sonya,
i was just recently diag. with sle lupus.
my symptoms are similar to yours. i dont want to scare you anymore, but if your rhumy is not putting you on the drug used for lupus (plaqunil) or helping you in any way. you need to find a new rhumy right away.
things can get much worse if not taken care of.
on the good side with proper medication you can live a pretty much normal life.
good luck and please take care of yourself
sha

 
Old 08-10-2003, 01:29 PM   #5
Newbie
 
Join Date: Aug 2003
Location: Pueblo, Co
Posts: 3
SonyaParker HB User
Cool

I am gonna call a couple of doctors tomorrow and see what I can do, cause I am really hurting. I get to the point even IbProfen or anything else don't help with the pain anymore.
So I will see who will help me and get it taken care of, no one has put me on meds, cause I got to scared to go back to my nurse Practioner cause she didn't even know what Lupus, or Ms was till she read on it. and wanted to do all these horrible test on me to find out what I had. so thats why I didnt go back!!
I will call places tomorrow and let you all know what I find out.
thanks for posting!!


------------------
Sonya Parker
__________________
Sonya Parker

 
Old 08-10-2003, 04:10 PM   #6
Junior Member
 
Join Date: Jul 2003
Location: Virginia
Posts: 23
teresamarie36 HB User
Question

Hello Everyone
I had a ANA test to come back positive and I had another test done this past week, I'm waiting on the results... What are the chances if this test comes back positive too that I could have lupus? Please write back ASAP
Thanks

 
Old 08-10-2003, 04:16 PM   #7
Junior Member
 
Join Date: Jul 2003
Location: Virginia
Posts: 23
teresamarie36 HB User
Question

Hello Everyone
I had a ANA test to come back positive and I had another test done this past week, I'm waiting on the results... What are the chances if this test comes back positive too that I could have lupus? Please write back ASAP
Thanks

 
Old 09-08-2003, 11:40 AM   #8
Senior Member
(female)
 
Join Date: Sep 2003
Location: Scotland
Posts: 186
littleone1972 HB User
Post

Sonya please please go to the doctor. I have negative tests for years before an immunologist picked up that I had SLE, actually drug induced (I took tetracyclines for years for acne) there are very few of us or not so many that they know about. I was on prednisolone for 2 years and managed to get off them and get into remission. I've been using a variety of complimentary therapies for the past 3 years and have managed to avoid another attack! it's scary, I believe I had it from 15/16 but wasn't diagnosed til 20. Go to your doctor, the sooner you get treatment sooner you will get better...anything else give me a shout! Don't be worried about what you read, some people have many many symptoms, others a few there is hope! Good luck

 
Old 09-13-2003, 09:22 PM   #9
Junior Member
 
Join Date: Jul 2003
Location: centrail point ,or.usa
Posts: 24
jkacope HB User
Post

i was diagnosed 16 yrs ago and i'm still alive and kicking!it sounds frightening,but if you don't go to your doc you can get seriusly ill.i was bed ridden when first diagnosed.but i took good care of myself,stayed tottally out of the sun and have read everything i could get my hands on.i was very lucky that my doc had just been to a convention on lupus.back then it took 3-4 weeks to get test results back.my rhumy said he is surprised i'm doing so well with as sick as i was.i work part time and lead a pretty normal life.except the sun and i will always be enemies.go to your doc-get help.there are drugs that will make you feel better.
kathy
__________________
kathy copeland

 
Old 09-14-2003, 07:45 PM   #10
Junior Member
 
Join Date: Apr 2003
Posts: 22
cmeg HB User
Talking

TO JKACOPE: (if you don't mind)

I was wondering what your current medications and treatments are after 16 years with lupus. I was diagnosed in 89 at age 14 and I was curious how our symptoms compare. I have had kidney involvement recently and in years past. I am currently on cytoxan, 10mg prednisone, 300mg plaquenil, 70mg fosamax and 80mg diovan to reduce my blood pressure.

The reason I ask is just recently I went through a month of excruciating pain due to a kidney stone that my doctor never diagnosed. (My rheumy and my primary are the same doc) I finally went to the ER and ended up needing emergency surgery. It seems as though if it's an actual health problem he puts it off as a "lupus symptom" and usually prescribes generic and temporary cures like pain killers or antibiotics. I have been on pretty much the same regimen for years with no attempt at trying different things to help with recurrent problems. I just want to know if my treatment is up to par with others that have had lupus this long and if I should look into getting a new doctor.

 
Closed Thread




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 03:25 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!