People live with it daily. They die from it, too. And right now great strides are being made in the areas finding a cure. At this point, experts are only really treating symptoms which can be varied and as many as 15 different symptoms…even more in extreme cases. That’s why they call it the “snowflake disease” because no two cases of MS are alike.
But there are some infusion type drugs that are showing promise.
When I was still in Houston about 15 years ago, I‘D fall downstairs, I fell upstairs. My leg would give out and I’d fall. Then years went by and I didn’t fall. Then one day, in my tiny little apartment, I felt very odd. I didn’t lose consciousness, but somehow I knew…even with no medical training at all….that I was having a neurological event of some sort. After it went away (and it was brief). I smiled , frowned, raised my eyebrows up and down, all the things I knew to ask potential stroke victims to do. I could follow all the facial protocols with ease. No stroke, but I knew something had happened. I have no idea what that silent, motionless 30-second neurological event was, but something tells me I’ve probably has MS it for about 17 years and never knew it.
But that would soon change.
My MS was diagnosed after a 72 hour stint of amnesia. My ER Neurologist called it Transient Global Amnesia and which apparently started in my sleep. I didn’t “wake up” for 72 hours. I have vague memories of brief lucidity from that lengthy period, but I was very confused. I remember thinking my iPad was a Playskool toy you draw on…one they didn’t have as I was a child . I knew the remote had something to do with the TV. I grabbed my phone receiver which I couldn’t for the life of me figure out how to work. It was a conglomeration of buttons that made no sense.. I somehow managed to grab my phone, my “toy” iPad and TV remote and miracle of miracles managed to drive across town to my mother’s house. I remember her answering the door and looking shocked. Everything went black after that. She obviously took me to the nearest ER and I woke up in a Neurological hospital room days later, not surprised. Even in my confusion I knew something had happened.
Transient Global Amnesia isn’t very common In MS cases. From what I understand brief bouts of amnesia aren’t unheard of, but not that common either, though memory fade is quite common. Ive got that and it seems get worse in scary little spourtd.. I can actually feel myself forgetting something going from room to room. It feels like a combination of the last remnants of water going down a drain in combination with a curtain lowering on a scene in a play.
MS is a chronic disease that damages the nerves in the spinal cord and brain, as well as the optic nerves. Sclerosis means scarring, and people with MS develop multiple areas of scar tissue in response to the nerve damage. Depending on where the damage occurs, symptoms may include problems with muscle control, balance, vision, or speech. I have lesions in my hippocampus which is responsible for memory and cognition. Lesions are either damage or scar tissue or both, Im not exactly sure other that they’re wounds inflicted in ways in which In unsure.
Some people have MS manifest in the inability to walk and talk, in their optic nerves resulting in failing vision or outright blindness. It also affects to some things I can certainly attest to; there are bowel and bladder indignities involved in MS.
There’s the neuropathy involved. The tingling, the feeling of touching an electrical fence that surges through your entire body. Other times, it feels like Alka Sektzer under you skin. Weird, I know, but that’s how it feels. to me, anyway. It comes and goes. And goes and comes.
Sometimes I can sleep for ten to 12 hours straight. Sometimes I’m up for 48. I have restless leg syndrome WHICH I LOATHE. Ever had it? It’s the worse. On occasion I get a weird taste of pine in my mouth. Not like I’ve even been gargling Pine Sol, just a pine taste. Other times it’s more coppery, metal taste. It varies.
I cannot deal with heat, I wilt. That’s fairly common among MSers.. Those who know me when they visit, know to bring their parka pajamas and snow boots. I haven’t turned on the heater in my house during the winter in three years.
MS hurts too, but I broke my right leg in three places in a car accident in 1991. It’s riddled with arthritis. My knee was particularly hard hit and walking is a chore. So pain is greater in my knee and other bones that were broken but other places unaffected by the accident are starting to hurt. I walk like Chester from Gunsmoke . Anyone? Anyone?
I desperately need a knee replacement, but I’ve had 17 surgeries, most of them accident related, and the thought of being cut on again and waking up to intentionally loud nurses hovering over your bed discussing their dating lives in Recovery , isn’t something I’m particularly keen on.
I have good days and suck fest days and so-so days. It’s very easy to feel sorry for myself and ask why do I have to endure these physical and emotional maladies (did I mention I’m also clinically depressed???) as I allow the the third drop of glaucoma medicine in my eyes at night, but the pity partY is short lived. Now, some might disagree with me but I do think you have to take a minute or two to cry and sob (privately) from time to time because A) it hurts and you don’t feel good and can never predict when a flare will hit. MS is very rude and inconsiderate. It often hits when you’ve made other plans B) you never know how much worse your case can get. That’s very scary and bC) see A and B. Plus, crying also helps release the stress of all your issues. Stress can (like most illnesses) run rough shod over MS. So, I say cry. Release helps. Why not? Chances are few docs would prescribe you Ativan..
As for those around me? People treat me differently. It’s not all that obvious, but I can feel and see the difference. They don’t like talking about it. It’s uncomfortable. Some are more attentive, others avoid me. I understand their motives.
But do they?
I’m not sure what caused my MS. Doctors don’t quite know for sure other than it’s the result of brain damage of some sort. I have a first cousin with MS so there could be a genetic-predisposition for it in my case. I did have head injury as a result of the wreck decades ago and yes, I was quite a little blow monkey in my youth and had a great time doing it. Sorry, but I did. It was fun. But why I didn’t connect snorting up God knows what into my nasal cavities and sinuses might eventually present a problem some day is beyond me, but well….you know the immortality of youth. Researchers are now thinking heavy cocaine use (much heavier than mine, which was probably on the higher side of mid-level usage) ) might be related to Lewey Body Dementia and perhaps other forms of Alzheimer’s, too. Time will tell.
So, let’s go interactive on MS’s ass here. If you have MS or know someone with it or you’re a caregiver of someone who has it or if you have some type of neurological disorder , please comment below and agree with me, disagree with me…just tell me about your days and night and how it affects your love, your live and everything else in between. Just communicate with me…..,please. I’d love to hear from you. Forward this to those affected if you would. I’d really appreciate it.
Thanks.
Here’s an MS kiss, Don’t worry, you can’t catch it.
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