View Full Version : Is there a reason to put off Formal Diagnosis?

04-16-2009, 08:55 PM
Hi , I hope I do not come across badly with this email but I am hoping for guidance. I suspect I have Lupus as does my Doctor - low white blood count, kidney function border line low, severe leg pain, extremely bloated- feels like my organs are 5 x normal, fatigu e and my entire left side is tingling and numb. I also have Raynards ......
My doctor wants me to do the antibody test for Lupus - I am hestitent to do so becasue I am fearful if I get a positive I will be at risk f not being able to get medical insurnace due to a "pre existing condition"
I also cannot find any direct link between diagnosis and meds to resolve...

Anyway, I was hoping I could get some opinions on the pros and cons of a formal diagnosis.

I also posted this on newly diagnosed site.


04-17-2009, 05:33 AM
hi lola,

as you can probably tell, you have come to the right place for answers and guidance.

yes, a lupus diagnosis can definitely affect your insurance prospects. Along with medical insurance, you will not be able to get life insurance after diagnosis....therefore, i would recommend that you get these two things in order before you let a dr. actually diagnose you with lupus. However, if you already have medical insurance, then any new insurance companies can not declare pre-existing condition. They can only do this if you did not have med. insurance before. So, keep your insurance present and you should be ok.

The dr. can start treatment prior to a diagnosis, so you have some time. There are a couple of meds that help with the diagnosis process. My rheumy gave me a medrol injection...there are two purposes for this, first lupus responds to this med., so it helps in the diagnosis. Also, it does give you some relief from the symptoms. Also, plaquenil is a very good med for helping control lupus. It takes this med 3 to 6 months to help, but most of us get some relief from it. The other meds used are cortisteroids and immune-suppresent meds. Both of these are serious treatments, and your dr. will advise you on these.

So, go the dr., get the tests, let them start you on plaquenil, and (if needed) delay a diagnosis until you can get your insurance affairs in order.

glad to see you here, welcome to our group.

04-17-2009, 05:37 AM
Hi Lola...

I understand your apprehension regarding a diagnose...

According to the ACR, you would require to have met 4 of the 11...for a diagnose..

Also a positive ANA is not a diagnosing tool, but apart of it. No one single test or symptoms is used as a diagnose for Lupus. Many lab tests are used to detect physical changes or conditions in your body that can occur with lupus. Each test result adds more information to the puzzle....to be diagnosed.

Having a positive ANA does not mean Lupus. Test results that suggest Lupus can be due to other illnesses, or can even be seen in healthy people. That is why they take your medical history, today's symptoms, family history and etc...

Yes, no medicine can resolve Lupus, it is a chronic, no cure disease. The key is to manage the disease to prevent further deterioration, to prevent organ involvement, control SOS flares not to cure it.

Without medication your apt to get worse, with Lupus or any disease....It is clear there is something going on within your body....

Hope this helps, Lola...
Be well..keep looking for your wellness.

04-20-2009, 02:26 PM
I was in the same dilemma as you are at one time in my life. Luckily I had a doctor who was also a friend and he gave me an informal diagnosis. Thus, I have never been formally diagnosed with lupus, only informally. My father has it also, and he was formally diagnosed. It didn't matter with him though because he was always covered by his group health insurance policy and he was a professional engineer.

Yes, it will affect health insurance prospects. Insurance companies treat it like they do cancer. What I mean by this is that they take its diagnosis very seriously and they won't cover it. I am only speaking of private insurance. Don't know what they will do if you are in a group policy, like those that cover you because you work for a company.

04-21-2009, 12:56 AM
I think that you probably need to do what you think is best for you for the time being. If your doc really thinks that you have lupus you can always ask to be treated, but put off a formal diagnosis until you do get your insurance in order. Most doctors are sensitive to the insurance game and hopefully you have one that will choose to work with you and not agaisnt you!! GOOD LUCK!