MS Diary – August 2014
Posted on 2014/8/22
Current Medications: Gilenya, Seroquel, Lexapro, Sifrol.
Current Physical Status:
50% Sensation loss beneath the Waist. Left knee agonising pain deep inside, An unusual vision issue when scenes are too complex, Double vision at least once daily for at least 10 minutes, Ongoing severe nausea thanks to God-awful dizziness, Facial Neuralgia, Disrupted gut processing, Burning feet and lower legs, Shaking hands and the nastiest, most painful muscle spasms I’ve ever known. The spasms can’t be released. They tighten up and try to tear themselves apart. Massage doesn’t help. Goanna Oil doesn’t help. I’ve been told Marijuana will, but we’re yet to cross that bridge.
Current Mental Status:
Incredible Fatigue, Increasingly bad short-term memory loss / working memory loss, sporadic confusion between left and right, Insomnia, Instant Bad Temper, Vocal tics, Visual and Auditory hallucinations.
I also have something I find very difficult to explain. Imagine your body was charging up with static electricity ever 30 seconds. Imagine that if you don’t discharge it by “flicking” your hands, it will discharge itself by causing your entire body to twitch within the next 15 seconds.
Yes, it’s horrible, it’s annoying and it’s bizarre. But don’t feel bad for ME, feel bad for Trish who puts up with it night after night.
Some of these symptoms are somewhat attenuated by the medication. In particular, the electricity discharge is helped enormously by the Sifrol (a Parkinson’s Medication).
For the record, bladder and bowel function is mostly normal however I don’t get as much notice as I used to! Now when I gotta go, I gotta GO.
I’ve been working on a few different techniques to deal with the insomnia. None have had any particular effect. Taking the Seroquel at 5pm seems to be the most effective. Unfortunately, our current house has wooden floors and would have to be the noisiest place I’ve ever lived. 4 kids with no idea how to tip-toe wake me regularly.
I keep hearing things and seeing things out of the corner of my eye. It’s most disconcerting. I am a man of science not religion and thankfully, I do not believe in anything supernatural. But that said, my current “interpretations” of the hallucinations are much like having a Good Guy and Bad Guy on my Shoulders! Stupid I know, but hey, that’s MS screwing with my brain chemistry.
Finally, can you believe the MS has resulted in a NICE sensation? If I tilt my head forward (chin down to chest) I get a very pleasant tingling throughout my body, much like being caressed by someone with clever fingers. It’s lovely. And addictive!
I’m feeling a little more depressed than normal as I’m seeing the MS progress. Slowly – but inexorably. I’m a positive person and I will stay positive, but I’d just like to see some medication have an effect that doesn’t just stop the symptoms but actually reverses some of it.
I’m seriously considering the Moscow Protocol as seen on 60 Minutes, but who’s got a lazy $50k hanging around?
Anyhoo, I’m still alive, still mobile and still ferocious!