Does Diagnosis Even Matter If the Treatment Is the Same?

Hello,
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?
Thank you.

Hi-

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


Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"
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What To Do While Waiting to Get Diagnosed

Dear Carla-

I have been back and forth to my Dr for over two years. I asked for a blood test to check my thyroid. She ordered a full work up after wondering why I was taking all the meds (5 at that time). Every thing was normal except thyroid.

This past fall was the first time I heard the word fibromyalgia. In January I was referred to a rheumatologist, who ordered updated blood work. Now it shows a 36 sed rate on a scale of 0-15 for men and 0-20 for woman being normal. And a positive ANA. The nurse would not explain what this means.  My appt with the rheumatologist is not for another month.

I have not worked in 2 1/2 years. I used to be a flat roofer, extremely active. Nowadays, just going to the store or walking around the block will knock me out for a day. I'm 47 and I just want to know what is going on with my body and to know that i am not crazy.

Hello -
And thanks for writing.
You're definitely not crazy. Something is wrong and you know it.
And the tests confirm it.

An elevated sed rate means you have inflammation.
A positive ANA means you have autoimmune activity. In other words, your immune system is attacking your healthy tissues. It's possible you may have lupus. I do.

The wait time to see a rheumatologist for the first time is always unacceptably long, and I am sorry about that. I don't think health professionals have any idea what psychological burden it is to be in limbo, tired and hurting and having no idea what is going on and why.

What you can do right now is start keeping a symptom journal. Nothing fancy. Just every day, jot down:
- any symptoms (fever, joint pain, rashes, fatigue, etc.).
- your energy level on a scale of 1-10
- pain level, 1-10
- weight and temperature

Then, when you go to the doctor, you'll have a lot of helpful data to give him/ her.

While you're at it, write out your medical history. Jot down
- all the stuff that went on over the last couple years with your health
- any illnesses in your family (blood relatives: mother, father, siblings, grandparents)
- any surgeries or pregnancies you've had
-  a list of all the drugs, prescription and nonprescription, that you are taking now, and how many milligrams of each, how many times per day.

Try to have all that ready before your appointment. Type it up, print it out, and bring it in. Even if they don't read it, you can have it to refer to in case your mind goes blank when they ask you questions. If you're lucky, they will read through it and put it in their chart.

Collecting this info is something you can do now while you're in limbo waiting for your appointment. It beats sitting around doing nothing, and it will very likely help you get the right diagnosis faster. In my book, getting the right diagnosis is so important- then you can figure out what to do next. Once you have your diagnosis, you can either go down the route of medications, or pursue alternative medicine and/ or nutritional changes. But getting diagnosed will keep you from doing something that might make things worse. Knowledge is power.

You can get your health back. I got mine back. It's all possible.
Just do what's in front of you. Pray if you're a praying person- ask to be given excellent help and the correct diagnosis and the next right step. And collect the data. And do something fun to distract yourself from your worries. That's what is in front of you right now.


Wishing you all the best-
Carla

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich
http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?