Could I have Lupus?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

BrokenCompass
New Member


Date Joined Feb 2012
Total Posts : 4
   Posted 2/28/2012 10:29 PM (GMT -6)   
Hey guys, I'm new to the forum! I'm looking for answers, (well, mostly thoughts) on what I've been dealing with.

I'm a 20 year old female. No drugs, drinking, smoking, or even sex. Tried to be pretty healthy in my life.

When I entered High School, I started feeling... just cruddy. Run down. Tired... but nothing really specific though. I had always been healthy. Then one day, when I was 16, I broke out in hives, everywhere, which happened once in my life (when I was 3). I began to swell everywhere too, in my joints and hands specifically. Then my joints began to HURT. So painful and warm to the touch. It lasted a few hours, and the urgent care doctor told me it was arthritis. I didnt have health insurance so I never followed up with a doctor.. all I know is it isn't rheumatoid arthritis.

Ever since that day my life has been drastically different. I finally got sick of it, bummed money from my parents, and so a low-cost doctor who diagnosed me with fibromyalgia and ran an ANA test. It came back positive with a 12 (not too high, but still positive) and he tested my SS-A antibodies (negative) and SS-B antibodies (came back at a 6.6, with the normal range being from 0.0 - 0.9). I went to a rheumatologist but was only able to see a nurse practitioner, who spent a majority of the time telling me a positive SS-B means nothing without SS-A and she didn't believe I had lupus.. but then when she left to ask the doctor, he said he believed I either have Lupus or Sjogrens (which is a type of lupus anyway) but I cant afford anymore blood work. They said with a diagnosis you usually have to match the symptoms with the blood work, so, here are my symptoms:

Gastrointestinal upset (started a few months after the hives breakout)
- Gastroparesis, cramping, diarrhea, ect
Horrible fatigue.. could probably fall asleep at any given time if I had the opportunity
When I wake up I don't feel rested, no matter how long I sleep
Short term memory problems
Headaches
Eyes are sensitive to light
Overheat easily... warm showers make me dizzy, light-headed, and feeling like I'm going to pass out
Cheeks turn red in the sun (I can't tell if this is a mild butterfly rash or just blushing, though I believe I have had a butterfly rash once after a warm shower)
Small rashes or skin irritations. Nothing major, but sometimes I'll have small red itchy rashes, or my skin will feel like it's been stung with no visible marks
Swollen hands, always (started with the hives and never seemed to fully go down. some days are worse than others)
Arthritis/joint paint in my knees, ankles, wrists, fingers (I use a cane now for exceptionally bad days)
Yeast infections often
Tingling hands and feet
Cold hands and feet
Occasional metallic taste in mouth
Sometimes my heart pounds and I feel a bit dizzy, and feel pressure in my head (weird sensation, hard to explain)
Dry eyes and mouth (though not severe)
Pain when taking deep breaths
Shortness of breath
Tendon problems, especially in my arms. Apparently the tendons are damaged and have been for about 2 years now... very painful.


My life has just been a roller-coaster for years because of whatever this is... I'm sick of doctors not listening, and I'm sick of feeling like I'm crazy. Do these symptoms sound like Lupus?? I just want answers that I unfortunately cannot afford right now. From what I've read online it is possible to have Lupus with SSA being negative but SSB being positive. Could this be what I'm fighting?

I really appreciate any replies.. I feel so alone in this and it would just be wonderful to talk to people that understand!

Post Edited (BrokenCompass) : 2/28/2012 9:33:06 PM (GMT-7)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/29/2012 10:44 AM (GMT -6)   
Can you get on medicaid or apply for disability? If you've got and arthritis Diagnosis already you might can get SSD. An attorney can be hired for a percentage of your check.

I'd try to make arrangements with the doctor to get full testing and pay him off slowly. I have to do that with my medical co-pays on my bloodwork. He sends me to a hospital out patient clinic to do my bloodwork.

It's hard to tell if you have lupus or not without further testing from a rheumy. I hope you can get answers soon.
Joy

BrokenCompass
New Member


Date Joined Feb 2012
Total Posts : 4
   Posted 2/29/2012 12:25 PM (GMT -6)   
I'm currently applying for SSI... unfortunately it's such a long, drawn-out process. My rheumatologist doesn't allow payment plans for some reason, which is so frustrating. :/

What other diseases cause elevated SSB?

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 2/29/2012 1:32 PM (GMT -6)   
You have several symptoms that could be lupus.  One thing about lupus is that it can be very difficult to diagnose and you can have clinical symptoms and be very sick but sometimes labs do not confirm the disease.  Eventually labs will confirm it but experienced rheumys will use both clinical symptoms and labs to make a diagnosis. 
 
 
Sjogrens is not lupus.  It is another autoimmune disease and often overlaps lupus and other AI diseases.
 
You have applied for SSI and that is good.  Have you tried to qualify for medicaid so you can continue your efforts to get a diagnosis and treatment?  Most cases of lupus are treatable but sometimes it takes a long time to both diagnose and find the right med or combination of meds to control your symptoms.  Some meds are very inexpensive but newer biologics are very expensive.
 
Bill
 
 

BrokenCompass
New Member


Date Joined Feb 2012
Total Posts : 4
   Posted 2/29/2012 5:43 PM (GMT -6)   
I don't qualify for Medicaid unless I get SSI, which is so frustrating.

Does Sjogrens cause a butterfly rash? I had one very similar recently, it went across the bridge of my nose and across my cheeks, and it looked scaly. Is that specific to lupus?

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 2/29/2012 5:56 PM (GMT -6)   
A butterfly rash is associated with lupus but not everyone gets it.  I did not.  As far as I know it is not associated with Sjogrens, or any other disease, which does not affect skin like lupus does.  They are very different diseases.  Sjogrens affects tissue within glands that make moisture.  Lupus can attack virtually any part of the body and there is a wide variety of symptoms and it can mimic many other diseases which is why it can be so difficult to diagnose.
 
 
Bill

BrokenCompass
New Member


Date Joined Feb 2012
Total Posts : 4
   Posted 2/29/2012 6:07 PM (GMT -6)   
My mouth is dry but nothing to the caliber that website describes... and my dry eyes and dry mouth came much later than my other symptoms. Thank you for the links though, I really appreciate it!

I've got problems all across my body, nothing is really localized. The more I read about Sjogrens the more I feel like I have much worse and widespread problems than that...

My friend recently told me she's noticed my cheeks get very red in the sun lately, she described it similar to a butterfly rash. Lupus patients dont do well in the sun, right?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/29/2012 6:53 PM (GMT -6)   
That's right...
I don't do well in the sun and florescent lighting. I wear 100 spf sunscreen by neutragena (spectrum). It works very well for me. When I'm outside I wear the sunscreen, wear sun protective clothing, and a sun hat. I feel a little silly in all that garb but if I don't do it I itch horribly, turn red, and hurt later for days.
Recently I had to sit under unprotected florescent lighting for 7 hours for a lecture. I had my sunscreen on and my sun protective clothing (long sleeved), but I'm having a flare from it now.
You can buy sun protective clothing on line or at sporting goods stores.
Joy
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, June 24, 2018 7:22 AM (GMT -6)
There are a total of 2,974,692 posts in 326,201 threads.
View Active Threads


Who's Online
This forum has 161300 registered members. Please welcome our newest member, Dakotab02.
378 Guest(s), 3 Registered Member(s) are currently online.  Details
TSGlassman, Saipan Paradise, straydog