Wednesday, July 10, 2013

Autoimmunity - the back story

I wrote earlier about the new chapter in my life - where I start managing this whole thing called "autoimmunity." And I know there are lots of questions about my story - how this whole thing started, my symptoms, etc.

Here's my attempt to answer as many as I've received.

1. What are my symptoms?

Lupus manifests itself differently in everyone. One person might have severe joint pain, another kidney disease and still another major skin problems.

In my case, severe fatigue, headaches, skin rashes and finally, blurring vision. It's the last one that finally got the attention of our local doctors, who are essentially the gatekeepers of Dutch medicine, charged with protecting the specialists from unnecessary visits from locals. (Side note: all specialists work in hospitals here, so in order to see one, you need a referral from your local General Practitioner)

2. How did I get to a lupus diagnosis?

It's taken over a year.

Longer than that, actually,

Before my now-4-year-old son was born, one of my pregnancy screener blood tests came back positive for ANA antibodies. Basically, that's a precursor of an autoimmune problem. However, at that time, additional tests didn't show anything "of concern" (again, quoting my doctor) and I didn't have any physical symptoms.

Lots of folks screen positive for ANAs, so I put any thought of any potential problem out of my mind.

Until last year, after my now-1-year-old daughter was born.

When she was about 6 weeks old, I started having major problems. A migraine that left me unable to move anything on the left side of my body for several hours. Severe fatigue. Blinding headaches. A photosensitive rash on both my arms. Hair loss. Join pain. Chest pain. Side pain.

After a brief stay in the hospital, I spent time just about every month visiting my doctor. I had several ultrasounds of my belly area, to check for any abnormalities. I had all of my hormones tested (twice) and even wore an EKG halter for 24 hours to check for signs of heart trouble.

Every time any test result would come back "normal," my doctors would suggest that I "get more sleep" or "find time to relax." One of my doctors even suggested this was "something in my head."

Finally, after 10ish months of basic-level blood tests and ultrasounds, I scheduled an appointment with my doctor, during which I told her that I wasn't leaving until she referred me to an internist. I left her office shortly thereafter, referral in hand.


(Side note: if you're familiar with the Dutch medical system, you'll understand how great it felt to get that referral!)

I was so happy finally getting to meet with the internist at the local hospital that covers our region.

He did an exam and ordered a battery of tests. He clued in on my family's history of autoimmune troubles and ordered another ANA test.

The test came back positive, as I expected, so he ordered another 3.

As I left his office, he told me not to worry. Usually, they all come back with "nothing to bother with." He asked me to set up an appointment with his assistant for a phone call tomorrow.

And, then he called yesterday.

As I mentioned in my earlier post, it's never a good thing when a doctor in any country calls you before a scheduled appointment.

He explained during that call that the blood tests indicate lupus.


3. What happens now?

My internist is talking with a rheumatologist tomorrow and the internist will let me know what they come up with, in terms of next steps to begin figuring out what to do, in terms of necessary treatment.

I've also been to a neurologist, to rule out any other possible situation that could be causing my vision problems. I'll have an MRI, a visual reactive stimulus test and an appointment with an opthamologist in the coming weeks.

Lots of time sitting in waiting rooms, but I just see that as lots of time to catch up on some long overdue reading! I'm doing Beth Moore's Bible study on the book of James at the moment (called Mercy Triumphs) and it'll be nice to have the extra time to review the great material in the study.

4. How are you doing?

Really, I'm pretty ok. I commented to a friend last week that I really didn't care what the diagnosis was, as long as I got one. And I mean that. I've been feeling so crummy for so long and I got so sick of hearing from my local doctor that I just need more sleep. In my gut, I knew that sleep wasn't going to fix what's going on inside me right now.

I've decided that I'm not going to get too worried about this, until I have something concrete to worry about.

And, even then, I'm going to remember who's in control of this situation.

Not me.

Not my local Dutch doctor.

Not even the hospital specialists.

I'm so blessed to have the Greatest Physician on my side. The God of Angel Armies, who's always with me.

5. Is there anything you can do right now?

Yes, there are a bunch of lifestyle choices anyone with an autoimmune disorder (lupus, MS, etc etc) can make to reduce/alleviate symptoms. None of which I'm looking forward to - giving up coffee, sugar and gluten. Booo. Also, vitamins, supplements and a few additional steps outlined in this article offer some options I can consider before beginning any treatment regimens my doctors might recommend.


Now you have the back story.

I'll keep you posted!

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