Learning auto immune diseases

This new journey I've been on has given me a lot of reason to research and learn. I have gained a whole new insight to auto-immune diseases and what they do.

An auto-immune disease is a condition where your immune system starts to attack your organs or nervous system in various ways. Like with Autism, there is a wide spectrum of these conditions and they can be very hard to pin down and diagnose. This causes a lot of stress between doctors and patients. Some patients complain that doctors think it's all imagination.

Thanks to two MRI's we know this isn't my imagination, but that's the only comfort we have. Blood tests and a lumbar puncture haven't proven helpful. My research has shown me that it can take years for them to show up there depending on which one I'm dealing with.

I recently learned that some people with auto-immune disorders have to watch out for the common cold. I had thought this was only a problem for immune-suppressed conditions, but I've learned differently.

First, when your immune system is attacking all your organs, it compromises itself and ability to handle real threats. Now, this isn't a problem for me in that way. Instead I learned something else. A cold can still take me out.

I have a very strong and over-reacting immune system. Imagine someone driving a nail with a wrecking ball. Sure, nail goes but so does the building. That's my immune system. Imagine how much energy that drains out of you. Recently our household was down with the flu. Both wife and child had their upchuck moments but not me.  I barely have a cough, but I lost all energy and couldn't get anything done. I was down for a whole day.

So, having a super strong immune system can work against you. I'm still trying to learn what all I can do to keep myself going. Looks like more trial and error.

My neuro update

So, yesterday I made the hundred mile drive to Shreveport to see a neurologist about my MRI. It was a good visit. She listened to me, answered my questions, and formed a diagnosis plan.

We did a big blood draw for an auto-immune panel. This way, if it's not MS, we can see if it might be one of the other auto-immune diseases. It's not easy to diagnose these on just an MRI after all.

I will be scheduled for a new MRI for after the holiday to see if anything has changed. If nothing has changed, it's not likely MS. If it has changed, then it may be MS. If it's not conclusive a lumbar puncture is the next step.

I really felt good about this trip. I wasn't treated like it was all in my head or that I was a waste of time. I didn't feel like I was the next project on the conveyor belt. That alone was enough to make me feel like this trip was a step forward. So, the fact that this takes time and multiple tests is easier to accept.