Or How I Learned To Start Worrying And Abhor This Debilitating Disease.
Today is August 5th, 2012. It’s a Sunday. I’m 28 years old. And I think I just had a relapse.
After a few days of extreme physical stress, consisting of a video-fluoroscopic swallowing study, 4km worth of walking, vomiting and such, we arrived at Saturday. I woke up, feeling rough but tolerable. And then I noticed I was getting a little twitchy. It got worse around 5pm. 6pm, I had to go lay down.
Massive muscle spasms started soon after that. Constant jerking of my legs and twisting of my back. Tightening of the muscles over and over. High-frequency muscle vibrations. And excruciating pain. After TWO HOURS it started to die down, but as it did, it spread.
It’s now 4:30am that night, almost 12 hours later and I’m still spasming and jerking around, my neck twisting, back pulling, legs and arms tightening and clenching. My entire body is tired and I ache. I’m running a mild fever and I barely have an appetite.
I’m having bouts of confusion, becoming unsure of what I was supposed to be doing. Trouble speaking and writing because of difficulty finding words, phrases. Sometimes, other words would pop up instead, or I’d get stuck in a loop, like going to type a word and instead typing “catcatcatcatcat”. More trouble with my memory, with remembering details about what I was doing, or what I was about to do. Trouble remembering internet addresses, places I’d visit, search terms. Things I do all the time.
Depersonalization, which is troublesome to me and was quite bad this time, to the point where I was having trouble talking about how I was feeling, because it “wasn’t me” having the feelings, it was the other me. It wasn’t a schizophrenia or multiple personality type thing, it just felt like I had had to become someone else to cope.
Derealization happened too at the same time, nothing seemed quite real, even though I was experiencing severe pain at the time and I knew THAT was real. I wasn’t unable to articulate what was going on to my partner, as I had trouble with concentrating on what was actually going on around me. I would just get lost in my head, which sometimes felt more real.
I guess the last thing is just a coping mechanism for the severe pain I am experiencing right now. People always ask about pain, say “How is it, 1 to 10, 10 being the worst you’ve ever had.”. I’m going to have to redefine my scale, again. Time was, I couldn’t even conceive of pain like this.
Koekje brushed his fingers up against my arm and I wanted to scream. I flinched away, then had to bring his hand back. I need the touch more than the pain can stop it. It hurts, it’s excruciating, I’m tired and confused and my head feels full of marbles and fog. But just his hand on my arm makes it all copable with. He makes me keep going :)
Well hey there tumblr, been a while, hasn’t it! Here’s what happened, that I forgot to mention:
I saw a neuropsychiatrist and they suggested I go in for a Video EEG, to monitor my brain and find out if I was having any actual seizures, what type, where in the brain they happened, the exact physical nature, etcetera. It was supposed to be for 3 days, but ended up being an entire week.
It was boring and frustrating, because I was hooked into a wall-mounted processing unit and I had a 15ft cable that just about reached the bathroom and that was my limit of movement. Very dull. And I didn’t even have any recorded seizures.
Copy-pasted from my inkbunny journal is what happened during it and what’s going to happen in the near future. Enjoy the read:
I got home this afternoon~
Over the next two weeks I should get compiled reports on my bloodwork in, plus a report on my EEG and the results of my urinalysis.
My blood showed low levels of an enzyme called Ceruloplasmin. It carries copper in the blood. Too little can interfere with your copper levels and lead to it being deposited in odd places, where it can do damage.
It can permanently damage the brain, cause liver scarring (cirrhosis), calcium deposition in the kidneys, iron deposition in many organs (which causes damage on its own, pesky iron) and other things…
BUT it can be treated more effectively with chelation agents.
So it’s also a ray of hope?
Oh, and I have low vitamin B12 too, so I have to take suppliments of that~
I also have to see a neurogeneticist, make followups with my neuropsychiatrist and epileptologist, plus appointments with my pain management specialist, neurologist and primary care physician.
It’s still all go here @_@
…but I’ll have time for relaxing, playing Diablo 3 and stuff like that~ Yay.
I hope I’ll have more information soon. And data. Who wants to see data?
I guess this is an introductory post, wherein I’ll detail who I am and what’s happened in the lead up ‘til now.
I’m Arcturus Kirwin, I live in Brooklyn and I’m 28. I suffer from what is believed to be by doctors far smarter than I (or at least more knowledgable), mitochondrial disease. It makes me tired and confused. Forgetful, clumsy and a complete spaz. And a lot of the time, very VERY bitchy.
I can’t write or work like I used to, and I’ve lost a lot of the use in my legs. I envision, that perhaps in a few years time, I won’t be able to use them at all. 3? 5? 10 years? Who knows. Remitting-Relapsing things like this are… an annoyance, at best.
And at worst, I have sincerely wished that I didn’t have legs at all, because the excruciating agony they cause me.
It’s gotten to the point now where it’s affecting my lower back, too. It’s why, from in the near future and then on, I intend to use a wheelchair to get around whenever I can.
That way, I don’t have to use my damaged but not totally useless legs.
I thought I’d make this tumblr so that I’d have a place to put my thoughts, talk about what I’ve been doing, how -I- am doing and so on.
Today, I went to my neurologist. We’re waiting on some blood test results and for me to get my liver ultrasounded (but no probes!), plus I need to see a: Neuropsychiatrist, a Pain Management Doctor, a Dermatologist and a neurology colleague of his who specializes in epilepsy, which means they might be able to treat and lessen my tremors and muscle spasms.
That’d be totally sweet. And that’s what I’m hoping to get out of all this energy and stress I am expending/creating. That things can be ameliorated slightly and that, when they find out exactly WHAT mitochondrial disease I have, they can plan a treatment to slow it.
At the very least, what I know now is there’s no physical damage to my brain and that my eyes are in pretty sweet condition, as is my heart. That’s something, right?