It's been a pretty eventful week, I suppose. All things considered, of course.
So, everyone's been asking me on Twitter and Facebook about my neurologist's appointment. The truth is, I've been so disheartened by the news that I've been sort of Meh about talking about it much. I'll be honest, I walked into the appointment hoping against hope that she'd have a diagnosis and a magic pill/potion that would fix me.
I'm guessing you've figured out by now that it didn't happen.
First things first, the spinal tap came back as inconclusive. Meaning, it can't confirm or rule out Multiple Sclerosis as a diagnosis. Evidently there are certain bands of proteins that they were looking for. If they show up in the spinal fluid and NOT in the blood, it's pretty indicative of MS. Well, lucky girl me, the proteins show up in both my spinal fluid AND my blood. Which means the diagnosis can go either way. I could have MS, or I could not. The only way to know for sure is to wait and see if I get additional occurrences. GREEEEAAAT, that was exactly what I wanted to hear, doc, thanks.
The current diagnosis is ADEM - Acute Disseminated Encephalomyelitis. I'm going to borrow from myelitis.org to explain what that is.
Acute disseminated encephalomyelitis (ADEM) is a neurological disorder characterized by inflammation of the brain and spinal cord caused by damage to the myelin sheath. The myelin sheath is the fatty covering, which acts as an insulator, on nerve fibers in the brain. ADEM may occur in association with a viral or bacterial infection, as a complication of inoculation or vaccination, or without a preceding cause. Onset of the disorder is sudden. Symptoms, which vary among individuals, may include headache, delirium, lethargy, coma, seizures, stiff neck, fever, ataxia, optic neuritis, transverse myelitis, vomiting, and weight loss. Other symptoms may include monoparesis (paralysis of a single limb) or hemiplegia (paralysis on one side of the body). The disorder occurs in children more often than in adults.Thanks to the inconclusive spinal tap, we still don't know WHY this happened to me. And we still don't know if it's going to happen again. I'll have an MRI ever so often to watch for additional demyelination.
My vision is improving, which is awesome. I still have the double vision, but I'm getting moments of stillness more often. My balance is improving, too. I only use the walker/wheelchair when I know I'm going to be covering big distances, but other than that I've been wobbling around the house on my own two feet. I still have no temperature sense on my left hand side, though. I was holding a mug of tea tonight, and one hand was nice and toasty, and the other could have been holding a cup of lukewarm water for all I could tell.
Oh! And random oddness? Got a mosquito bite on my left leg. Could feel the itch. Couldn't feel the scratch. Yeah...that sucked exactly as much as you think it did.
Dr. R and I also talked about recovery timelines. She says that most patients reach 80% of their baseline within 6 months, and have up to 2 years to gain that additional 20%. A medical journal I found states that full recovery is seen in 50%-75% of cases. Those are pretty good odds, I think. And I'm going to work my ass off to be in that range.
There are a couple things I can do to improve my odds. The first is starting therapy. As soon as I get the authorization from my insurance company, I'm going to start physical therapy and vestibular therapy. Hopefully the combination of the two will get me strong enough to return to my regularly-scheduled life asap. Secondly, I have to be careful about what I eat. Because of the disease, my immune system can choose to spontaneously overreact to anything foreign - ie, extra vitamins/supplements, preservatives, processed foods, etc. I'm supposed to stick to healthy, whole, as natural as possible foods. Which, I think we can all agree, is a good healthy decision anyway, so I'm not fussing about making the change.
Despite the fact the Dr. R says it's not environmentally based, I'm sort of on freakout-mode about the chemicals in my everyday life. Especially shampoos and things that go on my head. I mean, that's a fraction of an inch away from my brain! So, even though there's no indications per the doctor, I'm switching everything that goes on my head. And I've discovered exactly how challenging it is to find headcare products that aren't loaded with scary-sounding chemicals that I can't pronounce. I'm compromising by using natural babycare products. They smell good, and I figure if they're safe for newborns, I'm probably pretty clear of anything that may be hazardous. Luckily, my hair is so short because of St. Baldrick's, so I don't need styling products or anything.
Now would be the appropriate time to share how very, very thankful I am for my insurance plan! I met my deductible and co-insurance on my first trip to the ER, and though I can see my medical bills piling up in my insurance records, I'm not being charged for it. I can't even imagine if I didn't have insurance right now, oh my gosh.
I'm also EXTREMELY grateful to the amazing people in my life. I've received many kind cards, texts, and notes of encouragement and support, lovely drawings from my friend's children, and offers of help everywhere I look. I'm a lucky woman, and I know it. I couldn't do this without the love and support I'm getting. And if you happen to see the stunning creature I call my roommate, give her a hug, would you? Because she's picking up all the slack around the house, and taking care of me, and I just think she's wonderful.
Wow, this got really long really quickly. Sorry guys. If you're still reading, thanks!