Category: plasmapheresis

Grave Muscular Weakness – that’s what it literally means. One day your legs just give out. You try to make a move and you catch yourself thinking – who the hell replaced my legs with stones?! Because it feels like you’re dragging bags filled with rocks behind you, instead of your extremities. You realize you need to stop every few steps to catch a breath and give your legs a break. Then you decide to keep going but your body is telling you to stop. And your body is right, because no matter how hard you try and how determined you are to get where you’re currently going, you can’t win with MG – She Knows Better. She will also decide for you whether she feels like opening that bottle of water, or holding your coffee cup, or even a fork. Me, for example, I get extremely tired just from holding onto a shopping cart. I’m not doing any acrobatics there, just simply holding the cart’s bar. And that hurts. My arms don’t like being in this particular position and there’s nothing I can do about it. I need a shopping cart in stores, since it lets me keep a balance and I can rest my body weight on it. Pushing it in from of me is a chore but at least I can sort of move.  I said sort of, because I look like a cross-country skier, swooshing my legs behind me – I must be a great attraction to look at. Oh well, you can’t have everything – you either have great legs, or sick legs. I used to have great ones, now I have the latter 😉

I’ve been on this medication for about 7 weeks now. It’s called Mestinon and it’s a muscle strengthener. At the beginning it helped me quite a lot. I noticed improvement in how I walked and carried myself in general. After about 2 weeks it all started going downhill. Mestinon is known for causing nasty gastrointestinal issues – whether you take it with food or without. On top of that, there’s this terrible nausea you can’t get rid of, because it’s the medication that’s in your system and there’s nothing you can do/take to ease it. Believe me, I have tried and failed miserably. For the last 3 days I’ve been having excruciating nausea and one of those days I actually threw up in my own car, while driving it. With my son in the back seat, confused and scared. So I’ve been stuck at home now, unable to move without gagging and getting a throbbing headache. And honestly, my legs have been hurting for the last 4-5 weeks, just like I wasn’t taking any medication at all. So what’s the point really? Why do I suffer like this, if it doesn’t even help anymore? Upping the dose just made the nausea worse and symptoms never improved. The last time I took Mestinon was Monday morning – it’s Thursday now and I’m still experiencing convulsions…

My doctor wants to put me on steroids but I refuse to put this crap in my body. She also wants me to have my thymus gland removed even thought he CT scan didn’t show any changes but the surgery is ‘to be safe’. And I would rather have that surgery, than take steroids but I don’t think I can avoid one or the other. They also want to perform a plasmapheresis before the surgery, to boost up my energy and strength level for the time being. I have some time to think about it, since I’m leaving for Europe for about 6 weeks. I’m going home, to Poland, to repair my soul and body (hopefully) but right now I’m terrified of that trip, since I’m traveling with a toddler, all by myself. Will I manage? I’m responsible for the safety of my child and meanwhile I can’t even pull myself together and pretend I’m ok, because I am really not. I have 3 more days to try to get better, before we leave. If it’s the last thing I do, I’m gonna do it.