I am surprised to find this morning that I am not a mass of bleeding scars. Yes, the dreaded itchy skin is back. It is one of those symptoms that those of us with MS have always known about, but it has only been in the last couple of years that it has actually been recognised as a symptom. When it starts, you know about it. Usually, it when I find either blood on my nails, or I am suddenly aware of those fine lines of scaring that shows my nails have done their damage. On the surface saying that your skin is itchy, sounds like such a minor thing. But if you have ever had an allergic reaction to something or the measles, you have a window into it, but being MS, it has a nasty twist. Firstly, it jumps all over your body, you might have just dug a whole into the back of your neck or ear, to seconds later finding you’re working on another on your foot. Secondly, there is nothing that calms or stops it. Like everything else, this itching isn’t real, it is miss firing nerves and nerves don’t react to creams or potions. There doesn’t seem to be any meds that work on it either. For me, it is my head that seems to be most prone to it, especially the back of my head and my ears, not on the insides, just anywhere on the outside and it has already cost me my left earlobe.
OK, it was partly my own fault, but I didn’t know that I had MS when I had my ear pierced over 30 times. I can’t actually remember now exactly how many earrings I had in it, but almost every single one other than the long dangly ones I wore around the outer edge, were all beautifully sparkling cubic zirconium. I really loved the way it looked and almost everyone who saw it commented on it. When the problem started, I didn’t even know I had MS, but I constantly found myself trying to scratch in between the earnings. I didn’t realise that I was causing a problem, as when you have those many earrings, you are inclined to leave them in all the time. I would once every couple of weeks take them all out, clean them and put them back in. During the day, if I found my ear itching, I was, of course, gentle with it, but at night, I clearly wasn’t so gentle. Slowly, the pushing and pulling on the hidden skin that I was trying to get to was stretching some of the holes. I wasn’t helping even more by the fact I had discovered that pinching and pulling gently worked better than trying to scratch. Eventually, some of those holes started to join together and I had long slits, separated by thin slivers of skin. I found ways of hiding it, but it just made it worse. I felt like I was in danger of waking one morning to find my earlobe on the pillow. My doctor referred me to the hospital & the consultant I saw there said he had never seen such a badly shredded ear. Neither of us could actually explain why it itched so badly, but he had only one solution, to cut my earlobe off. Trust me when I say there is nothing so odd as lying back in a chair and listening to someone snipping away earlobe with a pair of scissors.
That was about a year before I became housebound. I didn’t then have the slightest understanding that it was caused by my MS. In fact, it was only about 4 or 5 years ago, that I started to find clues that proved it. Up until then it had just lived with these mad scratching sessions, but something made me buy some cream to have on hand for the next one. It didn’t work, that was the first clue. It was enough for me to start thinking about it as a sensation rather than a reality and searched online for “MS itch”. All I could find were people talking about it, trying to help each other with the problem their neuro’s said was nothing to do with their MS. There were more than enough of them to convince me, that it is another symptom. I discovered as well that I was lucky, to have it mainly in one part of me, I did occasionally have it in other parts of my body, but at that point my head was the favoured area. The more I thought about it, the more I could track this stupid itch right back to not long after my first recognised symptoms. Back then, as I didn’t know what was wrong with me, I spent a lot of money on cosmetics, shampoos and soaps, convinced I had to be allergic to something. Every few months, I throw everything out and started again, but never found an answer. Eventually you just learn to live with it and stop yourself every time you start scratching as no one wants blood dripping down their face when out for an evening of fun. When 3 years ago my diaphragm started to go into spasm along with my intercostal muscles, the itching followed it. I would wake frequently with scaring all over my ribs where I have once again removed skin in my desperation to rid myself of nerves that are driving me mad. Within the year, the itch could turn up anywhere at all. It is still centred on my head, especially the back of it. These days I must scratch at it a 100 times every day. Recently, I have also noted that pain often follows my scratching, even the lightest touch is enough for a line of pain to appear that slowly fades until it has gone. Unfortunately, as we all know, scratching is instinctive, my hand will be in motion and my nails in contact with the skin before I’m aware I had even felt the desire to scratch.
The more time that I spend online trying to either find a reason for this or that, or just to improve my knowledge about other conditions, I am finding again and again, patients and doctors in disagreement. I have been amazed at the number of people who share an illness and also share a symptom that doesn’t “fit” the recognised symptoms for their condition. Often I will find page after page of people convinced that what is causing them problems, has to be another symptom of their condition but the doctors say not. I have lived with symptoms I couldn’t explain for years, nausea was another of them. My neuro said it wasn’t my MS about 13 years ago, I accepted that and at the time, I couldn’t find anything online about it at all. Time ticked on, the internet improved and suddenly there it was, on the sites of some countries and not others. Yes, you read that correctly, it isn’t just some symptoms not being recognised in the illness at all, but different countries see the list of what does, differently. The more the web is opening up, and the easier it is now to translate entire pages from any language, if you have the time and luck, you wouldn’t believe what is out there. Social media is another wonderful tool for learning. When people from different countries chat, the info found in those conversations is often eye opening.
I am sure we are all guilty of it, just accepting without question what our doctors say to us. After all they are the experts aren’t they? I have learned more and more that what they are the expert of, is the information that they had been taught or have read. I could equally on that ground put myself forward as an expert on PRMS. I know for a fact that I know more about it than many doctors, I have actually had one ask me what it was. Even my GP, when I was first diagnosed, admitted I was the first person with MS that he had ever treated, so we would be learning together. So who do we turn to when we don’t know what is causing something, or if it is something we should worry about or not? More and more to me the answer is to consult the internet first. Note the word “consult”. Whatever you read, be sure to remember it is probably just part of the story, people don’t write everything in just one article, even if that article is about an illness. If it’s written by either a patient or a doctor, remember, it’s an opinion, not a complete truth without the possibility of error. Once you have everything clear in your head, then talk to your doctor, but don’t tell them you have been online, they don’t like that. Just try to come across as well informed and well read on your own condition, that doesn’t seem to upset them quite so much.
I am finding more and more that my opinion on my health comes from learning from my body. Like the itch, I try to remove the problem using standard everyday treatments, if they don’t work, I then apply my own brain to the problem and usually I find the reason by myself. I check, though, just to confirm I am right.
Please read my blog from 2 years ago – 12/08/2013 – Finding the strength
Two Rooms Plus Utilities 