Today's post from livinginalimitedworld.com (see link below) is the personal story of someone living with PRMS (Progressive-relapsing Multiple Sclerosis) but it is also the story of someone making their own choices when it comes to symptoms, severity of symptoms, doctors and the medications they prescribe. There are wise lessons for all of us living with neuropathy here and although the article doesn't talk about neuropathy as such (MS is also a serious neurological illness), it suggests a way of approaching the way our disease is treated and how much we need to take some of the control for ourselves. Well worth a read.
Posted on May 15, 2016
I seem to have the twitches today. Not the normal ones that I live with, this is more like a shudder that is travelling through my entire body, but only, in the parts of me that are actually moving. If any part of me is motionless, then I don’t feel a thing. Should I move my hand and say my foot at the same time, the shudder is there identically in both. It’s not only bizarre but it is also mildly upsetting. I know that I have felt it before, exactly when or what caused it then or now, I don’t have the slightest idea. It’s one of those things like so many others, appears, disturbers me for a while and vanishes. Admittedly, it doesn’t cause me any pain, it doesn’t do me any harm, but the same can be said for much of what happens in my body and possibly yours. Yet all of us go on daily, living with these things that no one really cares about because they aren’t going to kill us. Tell your doctor, and they might give you some kind of medicine that might possibly help, but they probably aren’t any more sure about it than we are, plus, they don’t have to live with their side effects.
I learned a long time ago that I had to gauge for myself, just how important it is for me to be rid of this or that symptom. To begin with, I was more than happy to take whatever drug they threw at me. I have and still do have amazing trust in my doctors, but I learned not to have the same trust in their medications. The problem I now know has a huge amount to do with my condition. I didn’t know it then, but I do now, that PRMS is notorious for not responding to any of the range of MS medications. When I was first diagnosed, according to the internet, PRMS didn’t exist. I even questioned my consultant as to why no one had heard of it. Apparently, it was rare, that rare, that the world wasn’t interested and that included the pharmaceutical industry. There are no drugs that are out there, not even the ones designed for MS patients that will ever help me with any of it other than the pain. Both of us, were in a world of discovery as my body was only going to respond if it suited it, not because it worked for others. In the first five years, I was changing drug after drug searching for the ones that would work the best. Then I called a halt to it. I worked out a hit and miss list, I ditched all the meds that didn’t work for me, regardless what my doctors said, and I kept the ones that I could live with. That was my first rule, “It had to work for me”.
That decision was closely followed by the one that said, “Can I live with this symptom, or do I need help”. It is so easy to run to our doctors every time that something happens that is different. Just because it is something that the average person would find terrifying, doesn’t mean it is something to be terrified by. My test mark is to say, “Is this symptom impairing my life”. This tremor or probably more accurately, this quiver, doesn’t stop me doing anything. It slows me down, but it doesn’t actually stop me doing things, therefore, I don’t need a doctor, and I don’t need medication for it. In fact, the only time I really turn to my doctor is when I am in pain. If it hadn’t been for the pain my intercostal muscles and diaphragm were causing me, I wouldn’t have been diagnosed with COPD when I was. Not being able to breathe was something I had grown used to, not being able to breathe and being in pain, was something I didn’t like at all.
The medications that I do take, I don’t know if they work for anyone else, or have even been tested on animals, but they have been tested on me. My small selection that I am on now, may not be the standard for MS, but they work for me and that is what matters. People ask me all the time if I have been on this drug or that one. Partly, because of my bad memory, I’m not always able to say, but I always question, why they are asking me, and are not testing them on themselves. Yes, I have a rare condition that is known not to respond as others do, but I honestly believe whatever our condition, the only way to find out if it’s going to help us, isn’t to read about it, or talk to others about it, it is quite simply to try it, and to remember, you can come off it again as easily as you started it. Our doctors can only advise us and suggest what they think will help. Unless they happen to share your condition, they won’t have tried it personally, and don’t even assume they have prescribed it to anyone else either, remember, all forms of MS are reasonable rare. After many years of practice, when my GP read my diagnosis, he told me I was the first person ever on his books to have the condition. Most of the time, our doctors are offering us a drug they know nothing about, other than what they have read. If it doesn’t work for you, well they always seem to have another one to offer, if you truly believe you really need it.
All of us have different body chemistries and every drug will work slightly differently for almost all of us. Hence those stupid lists of “possible side effects”, so many people miss that word “possible” and assume they will get them all. To date, I have only been aware of a handful of drugs that have ever caused me any issues, and they were really not worth mentioning.
https://livinginalimitedworld.com/2016/05/15/body-science/
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