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 neurological journey

Conditions are deteriorating. Things that remind me of that happen more frequently now. In the beginning no one could find any proof of the damage in my brain. I've researched websites to include places like the Mayo clinic and found that it's not easy to find the proof sought. It has to be drastic to show up on MRI's without a dye contrast. I was unlucky enough to have doctors who wouldn't run an MRI with contrast unless I was flailing on the floor. That compounded getting diagnosis accurately.

I even saw two neurologists and both of them discounted and dismissed me. The second literally kicked me out of his office only because I have bipolar disorder. He wouldn't hear anything I had to say.

In the mean time, I've consistently and slowly been losing my balance. I wear out faster than ever, despite exercise. I have vertigo over simple and slight movements of my body or head. And my cranial nerves hate it when I try to lift something heavy, even if I'm physically strong enough to. I faint or have a fainting spell. Coughing is dangerous, it will knock me out. Sneezing causes nerves in my neck and shoulders to react and stun me. It's called a brachial stun, used by police officers to subdue unruly suspects. And the contused nerves in my forehead hurt a lot and often. All of this seems to go hand in hand with my sensory disorder and make it worse too. It's all be gradual, but I can definitely tell the difference.

Maybe my problem was how the doctors in the areas I lived did things. The first time I spoke about this to a doctor here in Louisiana he set me up with a contrasted MRI. It came back as quote: "unusual". To that I say THANK YOU, it proves I'm not crazy or imagining things. I've talked to lots of people who have gone through this in trying to track their health and take care of themselves. It's a diminishing and dehumanizing feeling when doctors won't listen to you. Then it's a Godsend when they do. Maybe, now that I have an updated MRI that actually shows something, I'll have better luck with the new neurologist next month. Yeah that's as soon as I can get in and I have to drive fifty miles too.

In the mean time, my short term memory is crud. My coordination is worse. Last night, I was having a bowl of chili. I went to get a spoonful and slammed my hand into the steaming hot mixture instead. It dumped on my lap and scalded my hand. I can't tell you how much that messes with my head when that kind of thing happens. Two days before that, I spent an entire day in what felt like a narcotic fog. No, I hadn't taken anything stronger than tylenol. I was useless for the whole day. I didn't hit my head, or get sick. I was just fogged beyond belief. I've had to catch myself on doorways, walls, and getting up out of a chair is treacherous.

As these things happen, I find myself saying "what the hell?" I'm only 41. Didn't I have enough to deal with in my autism and bipolar? Or maybe it's something more depreciating than bipolar ever was. What if the bipolar was MS all along? I don't know, but sure hope to find answers soon.

I do everything in short intervals, even this blog. It sits on my screen as I stop and rest my hands in between. It's a struggle I won't give up, even if I eventually have to have someone else type it. If I can get someone (ha ha on that). Well, I will post on my journey more as it happens. Till then, be well.

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