Lupus Message Boards
Register Latest Topics
 
 
 


Reply
  Author   Comment  
Melanie

Junior Member
Registered:
Posts: 3
 #1 
Hi everyone,

I was recently diagnosed with Lupus. Or at least I think I was. Dr. spent over 2 hours with me which was wonderful. One would think I would know for sure given the amount of time spent. She told me FMLA and accommodation paperwork will state being treated for Lupus. If I go to emergency room - I state I have Lupus. Family Dr to be told I am being treated for Lupus. Guessing it is because they think it is an early catch with no organ damage they say "treated for ". I however do not know how to explain this to others - I have read it is difficult to diagnose and once labeled it makes things like life insurance etc difficult ? Opinions -Am I in this category? (facts found below) 

I was prescribed plaquenil. My ANA is positive in 2 blood tests  1:160 Homgenous (had to spell wrong because when I went to post it flagged the word) with speckled pattern also noticed, DNA DS positive in 2 blood tests 109 and 96. I have Thyroglobulin Antibodies (37 high) . Further tests show T3 and T4 okay which is why they think they caught it early and no damage to thyroid yet. I see endocrinologist in Jan. The rest of the tests such as Sjogrens, blood levels were fine. I have low C3 (77) and C4 is ok at 28.

My symptoms began last Jan. I was training in the cold for a marathon (not the first). I started to developed terrible leg pain. I was first treated for lower back L4 L5 with spinal injections. Then the fatigue set in, next was my knee swelled and was red and hot to touch. They treated that with an antibiotic for infection. I got a weird rash on my elbows. Then 2 months later the knee swelled again and I felt sick all over and severe fatigue, and many joints felt on fire and rest if body hurt and ached (not like the flu ache).  I started getting rashes on my chest - they only last a few hours. I went to Dr and I actually requested auto-immune test. This is when they came back with high ANA and DNA DS. So they sent me to Lupus Center (rheumatologist). They did the second set of blood work that all again came back positive or high - plus the thyroid antibodies. Follow up was more blood work. Between that and the next visit - I developed a bad rash on my out upper leg...which turned to a bruise within hours (covering the whole leg - no trauma to leg) . I took pictures for Dr. I also had a mild rash on my face which I had showed the dr a picture of (only last for a few hours) and she said it looked like butterfly but with angle it was head to see around the mouth area.Reviewed all this with Dr. - this is when they put me on plaquenil and said it was lupus or in some instances being treated for lupus and that this was caught very early so I am lucky. I have follow up again in 2 months.  Since then I have had a small but painful  mouth ulcer (never had these before).  

Also side questions - can the start of a cold trigger a flare? I have a cold now but before the onset I had severe fatigue - like could not think and felt like I was run over by a truck - not get out of bed tired. Also joints felt red and on fire. Then the cold set in. Just trying to understand .....

Thoughts ?

Thank you !
Melanie
Robinj

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 3,497
 #2 
Welcome Melaniesmiley: Dancegirl2 - keystrokes: :girly 
__________________
When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
Melanie

Junior Member
Registered:
Posts: 3
 #3 
Thank you ! :-) 
Cakelady

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 4,781
 #4 
Hi and welcome. The thing you will have to learn is to balance what you want to do and what you can do. It's trial and error

But welcome

__________________
The bond that links our true family is not one of blood, but one of respect and joy in each other's life
taffylinden

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 1,002
 #5 
Hi, Melanie! Glad you found this site. 

I'd guess the reason you were told to tell docs you're being "treated for" lupus is because it may affect how they'll diagnose and treat you for whatever physical complaints brings you in. I've never heard of doctors saying "treated for" as meaning "early lupus." I don't think there IS such a thing. 

You cannot be turned down for insurance because of a lupus diagnosis or any other preexisting condition. Until a few years back, that was true, but it isn't now.

Some people find that a cold or any other illness can trigger a flare. It'd make sense that anything that could cause the immune system to react could cause a flare. 

I don't know if any of this was helpful, but I hope so.

Taffy

Melanie

Junior Member
Registered:
Posts: 3
 #6 
Thank you ! Yes it does help....I am working on learning everything I can. I do understand about health insurance. I should have been more specific ...I meant life insurance. Do they look into details of overall health or do rates automatically soar?

I honestly never realized how managing one's own health care is like a job in itself (at least a first). I am an attorney and seriously considering learning much more and perhaps I can turn my experience toward helping someone else. 

It also makes sense about the onset of a cold. It was really weird the way it started with fatigue like flare then once I had the cold the fatigue actually was different (more normal tired). Anyway I am finding that symptoms  with lupus are so different for everyone. 

Thank you all who welcomed me. I hope someday I can positively contribute. 
Baker1

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 805
 #7 
Welcome Melanie,

You will probably be turned down for life insurance along with long-term care insurance.

__________________
Diane M
"I was chasing my dreams, but tripped over reality and busted my head on the truth."
TM729

Junior Member
Registered:
Posts: 1
 #8 
Hi Melanie,
I am also a runner, and my symptoms began running a full marathon in the cold. It exacerbated my first (and worst) flare up. It took almost 2 years for my bloodwork to show a positive ANA. I currently take plaquenil too which helps A LOT. A cold can trigger a flare, in my experience. It takes a while for the plaquenil to build up in your system, but I did notice a huge difference in my joint pain after a few months. Good luck!
Previous Topic | Next Topic
Print
Reply

Quick Navigation: