Anyone have experience with Lupus?

justEK

I was diagnosed with Lupus 2 years ago. I've had my blood work rechecked at least 3 times since, all the same results.

I was denied life insurance because of the Lupus and the positive ANA. I went in to have my doc fill out the forms and she wanted to run the labs again. They came back totally normal. Apparently, I do not have Lupus now. WTF?

I'm happy, don't get me wrong. But, WTF? What is going on with my body if it's not Lupus? I also have the classic lupus "butterfly rash" on my face.

I plan on making an appointment with a new rheumatologist, but thought I would see if anyone had any experience with this.

knmommy

yikes!!  (((hugs???)))  I know that Lupus mimics a lot of other things, or a lot of other things mimic Lupus. I would definatley get another opinion considering that the test were positive all other times but this one.   

goodheartedmommy

Remember the stuff with the lyme disease back in the summer?

justEK

goodheartedmommy:

Remember the stuff with the lyme disease back in the summer?

I do! But I tested positive in June of 09'. It's just all too strange. My body has been doing some crazy sh!t!

shouldbworkin

My mom has lupus that was clinically diagnosed - basically all of the symptoms and they diagnose it.  It started with a uticarial vasculitis dx.

jettagurl

Not lupus, but I have had (and still have) other auto-immune issues.  I was told that I have higher chances of getting lupus, but that was about 12-13 yrs ago, after I was told I needed a liver transplant and would never have kids. My liver is perfectly normal now, and they told me my body would attack a prego ute - which definitely never happened! 

It's my understanding that symptoms (including elevate/abnormal bloodwork) can come and go?  

 

justEK

shouldbworkin:

My mom has lupus that was clinically diagnosed - basically all of the symptoms and they diagnose it.  It started with a uticarial vasculitis dx.

Well i do have Sjogren's. Reading a little on your mom's initial diagnoses mentions sjogren's.

I have had some major issues with my skin off and on for a very long time. Crazy rashes just pop up in places and itch like crazy. They disappear just as fast as they show up.

This whole thing is getting so frustrating!

toosamom

Hi.  My name is Brenda, and I understand what you are going through.  I'm sure you are really annoyed, nervous, confused, scared, tired and aggravated.  You need to see a specialist.  A rheumatologist should be able to help you with your diagnosis.  You have to have something like six symptoms to have lupus.  The ANA test can go back and forth between positive and negative depending upon whether or not your disease is flaring up or if you have been taking medications to control the disease.  In addition, you may have a different autoimmune disease.  A lot of them have symptoms that crossover.  You may be diagnosed with Rheumatoid Arthritis but have lupus rashes.  You could have psoriatic arthritis.  A lot of times you can have many autoimmune disorders happening at once.  Hopefully you are feeling well and are just worried about the rashes.  In this case, don't worry too much and just try to find a good doctor that specializes in this.  Try not to stress out because stress can set off worse symptoms. Also, avoid sunburns...they can set it off too.  Feel free to PM me or anything if you have any questions.  Good luck!

justEK

toosamom:

Hi.  My name is Brenda, and I understand what you are going through.  I'm sure you are really annoyed, nervous, confused, scared, tired and aggravated.  You need to see a specialist.  A rheumatologist should be able to help you with your diagnosis.  You have to have something like six symptoms to have lupus.  The ANA test can go back and forth between positive and negative depending upon whether or not your disease is flaring up or if you have been taking medications to control the disease.  In addition, you may have a different autoimmune disease.  A lot of them have symptoms that crossover.  You may be diagnosed with Rheumatoid Arthritis but have lupus rashes.  You could have psoriatic arthritis.  A lot of times you can have many autoimmune disorders happening at once.  Hopefully you are feeling well and are just worried about the rashes.  In this case, don't worry too much and just try to find a good doctor that specializes in this.  Try not to stress out because stress can set off worse symptoms. Also, avoid sunburns...they can set it off too.  Feel free to PM me or anything if you have any questions.  Good luck!

Thank you for your response!

I have been seeing a rheumatologist. She is the one that diagnosed me with the sjogren's and borderline lupus two years ago. I've had so many things going on since then, I was told to consider it not borderline, but systemic. Now the blood work came back fine. 

My husband and I have made a ton of changes since the initial diagnoses. We are working on less stress and more relaxation. I have not taken any medications in two years except tylenol and even then, it's only one 500mg tablet if I have a headache. 

I think I am just going to give it about 6 months and then go somewhere else for a second opinion. I'm happy I technically don't have lupus, it's just confusing. I definitely need a better doctor, that's for sure.