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Erikaann
07-16-2009, 05:41 PM
Hello! My name is Erika and I'm a 37 year old just diagnosed with what they "think" is Lupus and IGA deficiency. I've had chronic respiratory infections my entire life and started having severe and chronic mouth and tongue ulcers over the past three years. After three years of seeing different docs, my immunologist confirmed IGA deficiency and the rheumotologist confirmed Lupus. What's weird is that I have negative ANA panels. However, I have a low "C3" level and am on Plaquenel and Prednazone. In the past three years I've been diagnosed with rheumatoid arthritis, asthma, nephritis of the kidney and much more. However, I run 3 miles a day, eat healthy and look great from the outside. Everyone thinks "I look fine" and thinks I'm a hypochondriac...so I've been really depressed. Does anyone know about "C3" levels or do any of my symptoms make sense? I'm really lost and hoping for help. Thanks for taking the time to read my post!

Oluwa
07-16-2009, 07:23 PM
Hi Erikaann...

Welcome here..I am Oluwa...

Your symptoms make sense and do correlate with a Lupus diagnose.

For Lupus...C3 is an indicator of inflammation and activity of Lupus...the following is from lupus.org....

Complement is the name of a group of proteins that protect the body against infections. They work by strengthening the body’s immune reactions. Complement proteins are used up by the inflammation caused by lupus, which is why people with inflammation due to active lupus often have low complement levels. There are nine protein groups of complement, so complement is identified by the letter C and the numbers 1 through 9. The most common complement tests are CH50, C3, and C4. CH50 measures the overall function of complement in the blood. Low levels of C3 or C4 may indicate active lupus.

It is okay to look fine and not feel well inside. It is okay if no one understands that...because really, I don't think they could because they don't have Lupus.

You know you are not a hypochondriac...we know you are not. Your doctors know you are not...you have a small arsenal of pills to proof it.

Who are these people that doubt you? Is it really important that they believe you? Sometimes it is easier, for me at least, to understand the fact, that people, family, friends will not understand us with this disease because they don't have it to experience it. They can have empathy for us..but understanding...humm that is hard to come by for many of us...With that thought, it takes a load a stress off of me.

Be well...hugs,
Love,
Oluwa

gina
07-17-2009, 06:32 AM
Again, great advice Oluwa couldn't say it better my self.

Some people just don't get it just because we look well and can function doesn't mean on the inside we feel like crap, but continue to live our lives the best we can.

So just ignore them.
We are here for you.

crmj1183
07-17-2009, 07:03 AM
Erickaann,

Hi, Dont be sad, I know how you could feel confused I too have been down that road the important thing is to remain positive, If they arent sure you have lupus, tell yourself thats fine but dont own it, I dont believe you have it. Most importantly I hope you dont have. Stay strong

Love,
Chriss

dsunshine
07-17-2009, 10:29 AM
Welcome to the site Erickaann!!!
Sorry to hear about your diagnosis. You are not a hypochondriac nor are the pains/symptons you are experiencing in your head. You know your body better than anyone...doctor or not so when you have pain or don't feel 100% inside regardless of how you look outside you need to express to everyone that your feelings and what you are feeling are not debateable!!!
I wish you health and remission and welcome again!

Erikaann
07-17-2009, 05:08 PM
Thank you all for your kind words and advice! I've been reading many posts and feel much better. God bless you all!

Pearl
07-17-2009, 07:18 PM
As you can see, this is a place of warmth and caring. Many here can relate to the "but you don't look sick" comment....I have learned over the years to just smile and say "thank you." Frankly, I don't want to look sick. Most people just don't understand and most of the time, they mean no harm.

Come here when you need kindness, friendship and understanding. You are not alone in your fight.

I wish you wellness,

Jana

mountaindreamer
07-18-2009, 05:53 AM
hi erika,

you have already been welcomed by many of our members, so you can see how much we all care about each other. As always, oluwa so eloquently answered your questions, and comforted you about dealing with "other people who don't understand".

So, i just want to join everyone and welcome you to our family,,,, i would be lost without the incredible members of this group.

debbie-b
07-18-2009, 06:34 AM
I have to agree with the others, we are lucky, that we don't look as bad as we feel, if we did, we would all look like crap. That would make it even worse, wouldn't it? When people say to me that I don't look sick, I always answer," yeah, I am lucky, aren't I".
I have learned to ignore what other people say, it is not important. You have us and we all understand.

Debbie