The Perfect Storm

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…..

Tomorrows reality

I think my lungs are just that bit better this morning, well I feel like I can actually breath most of the time. Once again I am hanging on the phone waiting to book an ambulance for Thursday, and I guess I might be waiting for a while, that is at least….., wow I take it all back that was quick and easy this time, too easy. Sorry but I just don’t trust them that much, the good thing to me is the appointment is at 5:45 pm, so I am hopeful that most of the clinics that have patient who need transport will be over by then. Now I just need to fill in all their forms so that I have them ready to go. I am thinking of doing that tomorrow and doing it while I am blogging so that I can give an idea of what they ask and what is needed to be relieved before you even see a doctor. I am sure that there are many out there who have like me never been anywhere such a place before, so some of you may find that helpful. I am not doing that today as Jake is coming to see me at 1pm today, so I want all my blogs and so on done before he arrives. Jake can’t open a pay pal account but he likes to buy things on Ebay from time to time, so I set it all up and if he wins he brings me the cash and collects his item, I have one of those items sitting here waiting. I actually haven’t seen him for a while so it will be nice to have a brief catch up. He has been the most constant of friends I have had, we may not see each other a lot but we speak every week and he makes a point of calling me. He cared for his father in his last few months and I think he has a better understanding than any of my other now vanished friends.

I try hard to explain and pass on what I have learned not just here but on twitter and Facebook, but I am touching still a tiny number, and of course they are the ones willing to listen, you can’t make people listen you can just hope that something touches a nerve and the learn from there. I expect that is something that I have in common with bloggers around the planet, a wish to pass on information, not for our own self glory, but so that a tiny part of the world is changed for the good. I wish I had the power of the TV channels, not one of which have I ever seen showing programs that explain those changes that are forced on millions of their viewers. Yes there is the odd program that will appear out of nowhere, or a story line in a soap that lasts a couple of months but that is all I have ever seen. Sorry dreaming out loud again! What is on TV just now that I am finding a refreshing break from all the Christmas programming is the doomsday programs about the 21st of December, sorry but I just love science faction, as in what if our planet was….? How could be survive if….? It never ceases to amaze me how much of it I have heard in Scifi, just proving how great their research is before they start to write.

I have recently received several approaches from well meaning people with what they believe is a cure for my MS, I do research each of them, but I always find one of two things, lots of money with no proof, or that it is something once again for people with relapse remitting MS. It is 12 months since I started to blog, strangle on the 21st, but in all that time and with all the people I have met on Twitter, here and Facebook, I have only once found one person who had the same version of MS as I have, I have made contact now with over 22 thousand people, and no list of hello’s from people with PRMS. It has made me realise more and more that the chance of any cure for me is zero. I had little doubt before I started all this, as well medical breakthroughs take years not days. If today a scientist had that eureka moment, it will probably be 20 – 30 years before anyone tries it on humans, I won’t be around to see that even start. I thought that from about month 6 after diagnosis, but the longer I remain in contact with the outside world and count those like me, my chances are now guaranteed to be zero. So my life is what it is and clearly that is still a good one, it is also one without false hope, something I think can be more damaging than the illness itself. I would drive myself nuts if I were to sit here searching for that cure, that magic pill that will change everything, acceptance of where you are is really one of those important steps towards living a good life, in your new environment. My hope is there, as big and as strong as ever, but my hope is the hope that I can continue to live this life for as long as I can, not that I will be well tomorrow skipping down the street.