Body and Brain

Basically the medical system that I started out in sucked. Some of the doctors were very nice, some were idiots. They all missed the boat, the ones who mattered anyway. I had symptoms my primary care doctor described to me as typical for MS. I lived in an area with numerous MS clinics / patients. My doctor told me it was crazy how many of his patients had MS. If I were his doctor he’d be demanding MRIs to check for MS. So? He ordered an MRI to look for MS. Because I worked in the hospital where he did, as did my mom, he was a bit more open with us than other patients perhaps. He warned us, ask the neuro to read the MRI not just the report. The Neuro said he would and did not. So, I ended up misdiagnosed. And I knew it…

I knew it because after a nasty tingling episode I was left with a banding feeling in my midsection. Now I had been diagnosed with just migraines. I knew I had migraines, pretty severe ones, I’d been diagnosed with them previously. But hey umm this banding feeling, as though someone was squeezing my stomach and back, it NEVER goes away, ever since a bad tingle attack. That is caused by a migraine? Oh yes, it’s an abdominal migraine. Rarer than a headache migraine, but yes. 24/7 (still have it 8 years later). NO. So we went to my primary doc with concerns. He ordered a abdominal CT. Nothing. But it caught my lungs. Pneumonia maybe. Lung x-ray ordered. Not Pneumonia. Possible Sarcoidosis. What the hell is that?

Turns out it’s a disease very similar to MS, but one that is most common in the lungs. Still, unlike MS which scars only the brain and spine, it can affect EVERY organ. Skin, lungs, brain. You name it. In the brain it looks like MS. It is basically impossible to tell it from MS on MRIs. Symptoms are the same. Anyway, a lung biopsy was done. I do have Sarcoid. Time for new MRIs at a new Radiology center, with new Neurologists for a fresh look at my brain. Was it Sarcoid?

Nope. See MS has a few patterns that are slightly different. Or so they told me. I was the typical age for a MS diagnosis. Finally an answer. Two diseases. Ok auto immune stuff can run in packs, if you will. I’d rather have MS in my brain than Sarcoid. People know MS. There are drugs to slow it down. Oh and hey, by the way, why we’re diagnosing you, did you know it looks like you have FIFTEEN YEARS worth of damage? You’ve been sick a long time, if you look back at your life, I bet you will recognize a lot of symptoms you never paid attention to because there is a LOT of damage. Great. Yes good that it’s MS, I can get on those drugs. And I did.  I mean they’re telling me I was probably I was sick since I was  a kid.

That was all in Oregon.  Now I am back in California. No insurance. And I go to a hospital you’d all know. And their neurologists? They ask me, why no spinal tap? Why would they diagnose you with MS when you have Sarcoid? And I’m back at step one. And they do a spinal tap (and a half, the first one didn’t work). And they hurt like hell. And they tell me it won’t get me answers but might help. Nothing will get me answers. A brain biopsy will. But more typical patterns or not, MS and Sarcoid are nearly identical so no one could tell me for sure. It’s a coin toss if a patient, like me, has a confirmed Sarcoid diagnosis and then they find damage like this in the brain. But the spinal tap changes their minds. They’re sure I have MS…

Until I go to their MS specific clinic. They tell me, we’re not so sure no matter what our other doctors told you. Now I’m off of my MS drugs as a test. I’ve done a new MRI. They tell me I may never know. My bf sighs. The doctor asks what he’s thinking. I say he’s thinking we’ve been through this before. I’ll probably be going through this for the rest of my life.

Those arrows are, indeed, pointing at damage. Hopefully, those bright spots don’t appear in your brain. In the simplest terms they can screw things all up — but not always. It can be random. See the brain is a funny thing. It (along with the heart of course) keeps us going, it sends instructions to everything else, arm move… but some days those bright spots interfere with those messages getting to where they’re going. So I don’t know from day to day how my body will behave or not behave. Some days are really bad, some are ALMOST “normal”. But since it’s all started I’ve never been 100% “normal” err *cough* ok.. normal is a silly word. I’ve not been like I was before this began.

Because I had to quit my job when my symptoms began to affect my abilities to function both at work and at home, I’ve turned to other things to keep me busy. First it was chainmail (the metal craft, not the spammy emails of course). That is a bit tough on my hands and eyes now, so the main site you’re seeing here, is my current way to stay busy — I’m teaching myself to draw. Sometimes it turns out badly, sometimes I like what I accomplish. Either way it’s not a “natural” talent (ok it’s not even a talent, I draw like a child, sue me) and can be a struggle on some days to even attempt this hobby, but I’m trying and hopefully slowly improving anyway.

And this, my friends is the short version.  This is something like 7 or 8?  years of every  blood test, neurologists, cardiologists, pulmonologists, a lung biopsy, breathing tests, MRIs, neuropsychologists, etc etc.   I’ve seen more doctors and had more tests than I should see in my life.  And it’s still going.  Being ill is a full time job.  Don’t get sick.  And if you do, be sure to only get one clear cut illness they can easily diagnosis and treat/cure, that is my advice to you and it’s free.  Much cheaper than a doctor