I received a tweet the other day from a friend, sending me a link to a piece of research information that I was more than happy to read. They have at last debunked one of the so-called “cures” for MS. For me, it was further proof that research papers really shouldn’t be put in the public domain. The article was published in the Lancet and following research paid for by the MS Society in Canada, on CCSVI. If you haven’t heard of it, it was a theory that blocked or narrowed neck veins to the brain might have been the cause. It has led to many people paying for expensive operations to be done, some claiming really good results, but many didn’t. The new research showed up something that had been totally ignored in the original, it’s not just people with MS, who have narrowed veins, and are totally symptom-free, in fact, 50% of those in the three groups they looked at. I fully understand that the publishing of medical research is really meant of the medical profession, but it is no longer staying there.
To me, false hope is worse than no hope at all, and this, is just one of far too many false hopes, that I have heard of in the time I have been diagnosed, and not just false hope for MS, for many, many conditions. In some ways, they are actually worse than the charlatan cures, as these are backed by well-respected organisations, with impeccable pedigrees, not someone with shiny shoes and slicked back hair and a dollar sign over their head. We all need hope, it’s almost a vital ingredient for a good life. I just wish, they wouldn’t publicise anything, that isn’t available today, tried, tested and rubber stamped, as I have spoken to too many people, distressed because they can’t afford the treatment they believe will save their lives. You just have to take a look at any of the funding circle websites, to see thousands of people, trying to raise the cash need for this or that treatment. Many are for well-recognised procedures, the fact they are there, is a different subject, but many are there on a wing and prayer. They would be better off spending what every money they have, just on living a happy life with those they love, for as long as they can.
I know it is up to us, what treatment we put our faith in. I guess it’s slightly different for me, as I have been told there is nothing, not even any of the disease modifying treatments already used for the treatment of MS, that will work for me, due to the form of MS I have. When you have been told something like that, you initially go through the disbelief. Yes, I searched in the hope of finding something somewhere, but when you come up against enough brick walls, you accept. I used to read every new discovery, but every single one I read always had somewhere in it, that it was only suitable for relapse-remitting MS. The odd one includes one of the main progressive forms, but none PRMS. I used to question my Neuro about them, but his answer was always the same, it’s not suitable for you. Now, well now I don’t read them, unless, someone sends them to me, and some do. When I do read them, though, I don’t look for a cure for me, I look for a cure for those to follow me, those who might at this second, be having their first symptoms. It is a fact, that all new therapies and drugs take testing, long drawn out testing. Nothing, even a new compound of aspirin, finds it way onto the market, without years of testing. Years, I don’t have.
There is one piece of information, that I want to hear far more than they have found a cure. I want to hear, that they have found the cause. I hate unsolved mysteries, the play on my mind, as I can’t believe that there is anything that can’t be solved, eventually. Personally, I have always believed that it will not be one thing, not just a virus, or just the locations it appears in, it will be a complex combination, that when the unfortunate person has collected all the pieces, they become ill. If you read from the start of my blog right through to today’s, you will find my opinion of some of those factors that build up to the perfect storm. There is one thing I am convinced of, though, they won’t find the answer until there is a universal questionnaire, that covers everything and anything, that could even have the slightest possibility of being involved. I have taken part in many online research questionnaires, in which there is always one glaring problem. They give multiple choice answers to check off, but in almost all, the answer I want to give just isn’t there. The second I find that, I know the research is flawed, and what I am actually filling in, is someone’s questions that they only want answers to, that prove their own personal theory is right. Once they do have a true questionnaire, it has to be given to everyone who has MS, regardless, of which form, and that the importance of it is truly stressed, so that those who usually wouldn’t take part in such things, will. Then, and only then, along with all the medical test results from their diagnosis, will they have a true picture, of what we the people living with the condition, really feel, think or believe. With conditions that can’t be diagnosed just by looking at the simple things, like blood and DNA alone, they are never going to find the answer. Running tests on a handful of people, have failed and failed again, so why keep repeating the same flawed process? Although, I am against postmortiums for natural deaths, these too, might be needed. I also believe, that it isn’t just MS, that would benefit from this approach. Yes, it’s time-consuming and, therefore, expensive, but if they want to really find the cause, or fully understand anything, they have to have the full data, to start with. Unfortunatly, until there is a way of doing all this for pennies, I believe, the causes will never be found.
The other day, I wrote about my thoughts on changing my pain control meds. Well, I have just spoken to my GP about the tablets I am on, and what I was hoping he would agree to. It appears, that the pain clinic was talking rubbish, I am already way above the upper levels of Gabapentin, so that can’t be increased. What we have discussed and agreed on, is that I come off the Amitryptiline and change over to a newer tablet that should have a better effect. Because I was reluctant to just do a straight swap, as I am aware of the withdrawal effect, I am going to take a staggered combination for one week then drop the Amitryptiline totally. Of course, in the time, it has taken me to speak to him, and write this, I’ve forgotten the name of the new drug, when I know, I will let you know. If at any time, I feel it’s not working for me, or the change over is too dramatic, well I will just go back to the Amitryptiline. If it fails in any way, well the only other option is for me to take an increase in Morphine. He thinks, from what I have told him, that I need to increase my current 70mg twice daily, to 90mg, but we’re not going down that route yet. I told him how many boosters I have been taking and he isn’t at all concerned about it, as he said, “That’s why I give them to you”. I don’t know what it is, but I doubt that I will ever be happy about spending my life on Morphine. I don’t even have a logical reason, that I am so against taking more. I can only assume that there was something I either read or heard, in the past that’s tucked away in my brain, just saying “No, don’t do it”, but I have no other choice.
Please read my blog from 2 years ago today – 07/01/2014 – Chipping and Changing
We have a large gold fan in our living room, it’s on the wall in the living room just above the sideboard. Back when the room had Christmas decorations filling any space large enough to take them and even the odd one…..