Usually, when you lose feeling or your body creates a wrong sensation, it is normally localised, as in, you can isolate it to a nerve group. Those sort of changes, in my world, are normal, and that’s what has been eating away at me, this wide body madness just doesn’t make sense. How and why, do I have so many isolated, but simultaneous sensations outbreaks? How can two fingers on one hand, a patch the size of an orange on the other, and a six by eight-inch patch on my thigh, totally dead, at the same time? Surely there are no connections, or is there? Of course, there is, and it appeared like a flash of light when I was talking to Adam last night, not my body, but my brain. I have known from day one when I was first told that I probably had MS, that my brain scans were a mess. The MRI carried out by the ENT specialist to see if he could find a reason for my dizziness, didn’t show up what he expected, but it showed up a brain in a total mess. I had more lesions than most people do, even after years of living with MS and they were widespread across the surface of my brain. I remember speaking to one of the doctors when I was an inpatient, having all the other tests done to be sure it was MS, about what my scan meant. He told me at the time, that I was coping surprisingly well, considering, the number of lesions I had on my brain. In his opinion, I should have been having far more issues than I was, which was a good thing, as my brain was clearly working well on rerouting. Anyway I digress, my MS clearly takes great pleasure on working on my brain, rather than my spin or any of the other places that lesions appear, although, they weren’t totally free of damage. My brain, was it’s main and chosen target. If the lesions have been spreading in the receptor section of my brain, then it makes perfect sense. It’s not damage to a million different parts of me, just to a few important parts of my brain. A lot of people forget, that our skin, is actually the biggest producers of sensations we have. How else would we know if it were windy, or we were too close to the fire? If the receptors are miss reading the true sensation, lets say, of something as simple as my clothes touching it, well the options are endless.
When I realised that, oddly, a lot of the worry sort of fell of my shoulders. I know that it isn’t any better news, and it’s only a theory, but it’s one that doesn’t just make sense, it’s the one I prefer. I often find that making sense of something is cathartic, I went from tied up in knots, without out having the slightest idea where to start untying them, to being able to relax, truly. Yesterday, was a day of putting myself through a personal hell. I kept prodding at different parts of me, not just with a finger, but with all kinds of different things, from sharp to as soft as I could find, trying to stimulate my skin and body to react. I was desperately trying to track them, to make patterns that matched with the different nerve clusters. I found I could trigger all sort of sensations, from cotton wool, just gently brushing me causing a response of fire, to sharp points, not feeling sharp, but dull, dead and retained way beyond the time I was actually doing anything. All I was doing was proving what I already knew, and I wasn’t discovering a single thing that helped me make sense of anything. It doesn’t take a genius to work out that I was terrified that I might actually lose my right hand, just as I lost my left 8 years ago, also oddly, that started to go wrong, at just this time of year. The first signs, I had of that, was when we were decorating the house with Christmas decorations, I kept dropping things. Not in the normal MS way, but I was finding that my hand just couldn’t deal with the weight of things. My wrist would collapse, my hand would suddenly just hang for a few seconds and then be fine. The first week of January and it was totally dead. No reflexes, no feeling, no movement, just nothing, a dead lump of useless flesh around an equally apparently useless bone. It stayed that way for nearly a year, then slowly returned, not fully, even to today it is still weaker than it should be, but useable. Of course, I was worried, finding deadness in so many different places, terrified me.
So far, I have lost no strength and no usage of any part of me at all. It’s purely the sensations. Somehow, most to the things that I feel, that doesn’t exist, I don’t just feel, it’s as though they have had a volume boost, set to extreme. One of the common ones is on my back, I keep feeling cold, not just like a draft, but like ice being on my skin, and it just keeps getting colder and colder. It starts in my spin and normally heads across the left side of my back. It doesn’t seem to matter what the sensation is, it always starts small, and spreads. For the last week, I don’t think I have had a single minute where there isn’t some wrong sensation somewhere. Equally boosted, are the small spasms that I have had for years. They used to be just this annoying feeling of a tight area, not tight enough to cause pain, just tight enough to let me know the muscle had constricted. Some of them, have suddenly started to produce a needle stick sensation. Almost as though they are shouting at me, “hey, I’m here!”. I am totally fed up, reacting to itches, tickles, pins and needles and so on, I would give anything, just to not feel. But the concept that it is the receptors in my brain, that have gone wrong, rather than my entire body, well that makes it somehow, that bit more bearable. Having said all that, I have two areas, that the sensation disappeared from a couple of months ago and has never recovered. I lost three of my toes on my left foot first, followed a couple of weeks later, by the same three on my right foot. I can now feel nothing from either set. Even though I am reasonably sure about the recepters being at fault for the majority of odd sensations, I don’t believe, they have anything to do with my feet, and I’m not totally convinced yet, that they are behind my right hand. It is quite happily coming and going, never totally right and spending more time dead, than alive. Equally, unlike all the other patches and area’s, the lose of feeling in my thumb and index finger, the size of the area never changes and so far, it hasn’t spread. I would be happy to put the blame down to my receptors, but for one reason, there are no changes in sensation. It is constantly lose of sensation, no burning, pins and needles, nothing other than lose of everything.
I spent a large part of yesterday reorganising how I do everything I do online. I have tweaked, changed, reordered and reorganised because, I have to have more time, less pressure, more space to do other things like relax. Living with PRMS isn’t a picnic, it plays tricks with you all the time, right now, I feel as though I am losing the game and that alone isn’t a nice feeling. I don’t know, no one does, what is ahead of me. If my changes will have the desired effect, as I no longer really know what is going on. I’ve never had to deal with something like this before. In some ways, that terrifying, in others, it feels as though I am heading into some kind of adventure. There is no point me sitting here fretting about it, as if there is one thing that I have learned and that is, PRMS does whatever it wants. At best, I can tinker at the edges, help to keep it steady or when it’s running wild, search for the brakes. The next month is going to be one of two things, fingers-crossed, it will turn out to be the better of those two.
Please read my blog from 2 years ago today – 22/12/2013 – Time to let go
This is going to be a day when nothing happens when it is meant to. At the minute, the hall floor is covered in the shopping delivered by Asda about an hour ago, the rest of the house…..
Hang in there girlfriend! I can so relate to the sensory stuff…once after getting very cold outside my legs and feet from the knees down stayed frozen for nearly a month. Add the heavy legs, and I felt like I was slogging through heavy freezing mud, for weeks. And they called my kind of MS (mainly sensory)’benign’! Until the fatigue and cognitive stuff reared their ugly heads.
A gentle hug from Seattle.
The note I left here seems to have not gone through. Snafu?
All my comments have been on approval, as I was having issues, with someone leaving rather nasty messages. I am planning to set them back to normal soon, unless they show up for Christmas 🙂