I was test for auto immune and told "probably lupus." I had a skin biopsy which stated "could be lupus." My rheumy does not think it matterswhat the diagnosis is because the treatment is same whether it's lupus or MCTD.
I have or had over the past 30 year all or almost all of the criteria on the lupus list. My problem is that they have not happened altogether at once.
Also, about the kidney: a few times my urine was coke color, but it was never collected at the time. Never know when it will happen.
Is my doctor right that it does not matter what the label of the disease, or should I be told?
Thanks for writing in.
I believe it's important to keep a symptom diary so doctors can have the most data to work with.
That is my first suggestion. Start keeping track of your daily symptoms. Also go back and reconstruct as much as you can, when you think this started, what your first symptoms were, and all symptoms with dates as well as you can remember.
It took me 2 years to get diagnosed with lupus, because I kept going in with different symptoms each time, and was so exhausted I couldn't remember all the other symptoms I'd had recently. No one suggested I keep a symptom log. I think it's important to have as much data as possible when you've got autoimmune stuff going on.
If you have odd-colored urine, maybe go into an urgent care center (they are fast and do walk-in appointments and sometimes have a lab on site). Ask for a urine test, telling them your concern about the odd-colored urine. It could be blood.
I think having a specific, definite diagnosis is helpful because
1) it makes it so much easier to go find books and support groups and read up on all your options.
2) Yes the treatment is basically the same for most autoimmune diseases. In mainstream medicine: immune suppressants. In alternative medicine: build up your health through nutrition, rest, and sometimes alternative therapies like acupuncture or reiki, etc. But there are some things that are specifically bad for certain diseases, so I think specific diagnosis is important.
You might like this article by Dr. Mark Hyman on autoimmune diseases: "how to stop attacking yourself" http://drhyman.com/blog/2010/07/30/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/
Your doctor has to put some kind of diagnosis code on his forms, so he could at least let you in on what he's writing on the forms. I would ask "What diagnosis are you writing down? Why did you choose that one?"
The odd colored urine is important to report.
Lupus can definitely go after your kidneys. You should be able to find out your kidney function without a biopsy. Pee in a cup, collect in a jug for 24 hours, get blood tests. I've had 2 kidney biopsies- they were a royal pain, they are not entirely safe (you have major blood vessels in your kidneys and could end up bleeding internally or getting infected) and we learned nothing from the ordeal. So I say, collect pee and blood to see if your kidneys are OK.
I know from the people who write to me that doctors for some reason are more hesitant to give out a lupus diagnosis. In fact I wrote a blog post about this- it's my most popular blog post, if that gives you any idea what a problem it is to get diagnosed with lupus these days. http://lupusandhumor.blogspot.com/2011/09/sjogrens-vs-lupus-smackdown.html
I would just ask him to tell me what he's writing on your lab forms as the diagnosis code. You have a right to know.
Hope this is helpful. Wishing you all the best
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