Now YOU, listen to ME!!
'An Unwelcome Visitor' blog, perhaps the break was good all round because you may have been getting thoroughly pissed off with my ramblings and I was definitely in need of a break from all things M.S.
Unfortunately, however hard I have tried to distance myself from 'This Bastard Thing', I can't, like the rest of us, avoid going any great distance (no pun intended) without thinking about it, it is not an easy thing to do, it is always there, it always will be and it will always be working it's 'unwanted' magic.
During these past couple of months I have had some run-ins with the powers that be, in my case the ones in the WHITE COATS!!! My feelings towards these people, by no means all of them, just a few in my case, have reached a bit of a low and when you meet one who thinks he can make sweeping decisions that have the potential to undo all of the good that has been done thus far, then you go on the attack!
I am fully aware of any potential problems that there may be with my heart along the way, although nothing has been proved, I have ECG's and BP checks and blood tests to keep an eye on this and if things in that department are obviously not going right, then I will mention that to my Doctor. Those of you who have come to know what I am all about are well aware that I was unable to work for long enough with two lengthy 'episodes' in the past, so I want to stay working for as long as I can and if I were to be perfectly honest, dying from a heart attack frightens me far less than spending the rest of my life in a wheelchair and being unable to do things for myself. As I have often said in the past, please don't judge me on my thoughts about my life, they are mine and mine alone, I would not dream of saying they are the way we should all think, I know I have said that before but I mean it, yours is yours, mine is mine.
On the morning of the visit with the Neurologist, I was in a slightly anxious mood, things as far as I was concerned were going along just fine and I did not know the person I was about see, he was as new to me as I to him, little did I know that in a few moments, my world was going to be halted in it's tracks! On reflection, I should have realized things were not going to go well when no handshake was offered to me and hardly any eye contact given, "WARNING,WARNING"!!
The guy had obviously, well to me anyway, not read my notes, if he had, then he would have known more about me and my history with 'This Bastard Thing'. Look, if I had gone in there with an in-growing toe nail or some mundane everyday kind of ailment, then his time is a bit of a premium, in out, next! However as we all know M.S is a disease, an incurable illness, we are a pretty pissed off group of people and so a little bit of eye contact would not go amiss, now would it!!
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MESSAGE TO THE NEUROLOGISTS OF THE WORLD
MESSAGE TO THE NEUROLOGISTS OF THE WORLD
' Learn these rules and there will be no problem!'
You the Neurologist must go out of your way to make you/me/us, feel comfortable about being in a consulting room.!!
RULE No.2
You the Neurologist must have read our notes BEFORE we arrive!!
RULE No.3
You the Neurologist must be understanding and reasonable to our situation and our requests!
RULE.No.4
You the Neurologist must look at us, talk to us and treat us as the human beings that have just walked into their office, NOT as a number on a list!
RULE No.5
You the Neurologist are NOT God, if you behave like God, we can always ask to see somebody else!
A REQUEST!
'This Bastard Thing' not THEM!
Am I being too touchy about my recent visit with the Neurologist, was I not going in with an open mind, was I not giving enough 'serious' thought to the things that were being laid out in front of me? Well, having been told to stop taking Modafinil because :-
1. It is not recognized as a drug that relieves M.S symptoms and is only recognized for the treatment of Narcolepsy! -
Why prescribe it to me in the first place!
2.It is potentially bad for my heart!
I am fully aware of that and have my heart checked accordingly!
3.There is no proven benefit from taking it at all!
WELL EXCUSE ME!!!
So you can imagine how I felt being told to stop taking Modafinil straight away and start taking Vitamin D instead! How the fuck could a 'food supplement' manage my symptoms !! Well my friends, the rug had well and truly been pulled out from under my feet and within a few days of 'doing as I was told', things started to deteriorate, fatigue came back with a vengeance, cognitive problems started to re-occur more often, my speech became noticeably worse as did my swallowing, I was fast going to hell in a handcart!
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Not for everyone!
I agree and I do appreciate that Modafinil is not good for everyone, I know some people do not gain any benefit from it at all, and some people only gain a little, but with me, I gained back my LIFE and I was not prepared to give that up at any cost!! Ok, so I tried Vitamin D as instructed, and it made me nauseous and gave me a blinding headache, was I taking too high a dose, was I taking too little, could this have been because my mind and body had got into such a bad place because of giving up Modafinil, maybe, who knows, or was I so angry with the Neurologist for not listening to me!
After those few days of anguish and heartache for me and my family, I decided to go back onto Modafinil and finish the supply that I still had left and almost straight away, those missing parts of me came back and with these came a decision from my wife and I to challenge the decision and through help from my Doctor, a second consultation was to be arranged with another Neurologist!
CHALK & CHEESE! (good Doc, bad Doc)
It was just over two months after seeing the first Neurologist when I was given a date to see another, in one sense I really wanted to but there was part of me that was really worried. Was it going to be a waste of time for me, was this one going to be any different from the first, was I going to have to rethink my whole future, that may sound 'dramatic' but believe me, that is how I felt. The morning came for my appointment, I went into work as usual, mostly to take my mind off of what was possibly in store for me, well, for us really because the outcome would affect my whole family! While we sat at the hospital I said very little, my wife tried to keep me talking and all I could manage were the odd yes and no, my mind was elsewhere. My name was called out, not by the receptionist but by a man, I remember standing up and saying to myself, "here we go, this could go either way", we walked in the direction of the voice and without realizing, I walked straight past the Doctor, if my wife had not nudged me I would have carried on walking!! "Are you Martin ?" when I realized that he was talking to me, I stopped and he introduced himself and held out his hand!! Straight away, I thought that this was a decent bloke, from the get go, he was going out of his way to make me feel at ease, so different to my other encounter a few months ago. We went into a side room, sat down and he asked me about myself, it was pretty obvious he knew a bit about me and soon into the chat he asked me how I thought Modafinil was doing me good! He then went on to explain about the bad press it had been getting, and did I know why, and as it happened, I did know of the possible implications to me, obviously I did, I have done so much research on this drug and I think he was pleased that I was aware of the side effects that 'can' happen to some people. He then explained that he was a Neurologist whose main interest is the study of sleep behavior, levels of fatigue and how it can effect people in different ways, how it can be controlled with medications, in particular and of great importance to me, Modafinil. With his help and that of my wife, I filled out a chart which gave him a pretty good idea on my life in dealing with M.S fatigue so far, something I have never done since I have had M.S, as I have said before, all manner of drugs, you name it, physio, acupuncture, steroid infusions but I have never done this test. The test as you may know is an Epworth Sleep Score, it was one of those Q+A charts, the type that when you are completely honest with yourself, you tend to 'big up', make yourself look good, please stop shaking your heads at me, we ALL do it at some time! Anyway, some of the scores have been abnormally high when as in this case, assessed retrospectively and all points to 'secondary' as opposed to 'primary' Narcolepsy. I am so glad my wife was there because over the last fifteen years, I will be perfectly honest, I have subconsciously, or maybe deliberately even, blanked certain parts of my life out, I seem to have conveniently 'forgotten' how bad I once was, all of those bad days as far as I am concerned anyway are now 'locked' away in a box in my head somewhere, I think it is something all us members of this shitty club have done at some stage, like it or not, there are plenty of the bad parts that we have tended to brush under the carpet, in my case those day's are very much in the 'then' as opposed to the 'now' category!! After looking at my answers, then going through them with me, he was pretty certain that I also suffer from Narcolepsy which may have been triggered off by my M.S or the other way round, at this stage he cannot be certain which. This was one of those surreal moments, should I be pleased, should I be happy, although I was not shocked as such by this revelation, I was not too sure how to deal with the news at first, I suppose I was a little bit stunned! Anyway long story short, he is happy for me to stay on Modafinil, because as you may or may not know, Modafinil is readily prescribed for Narcolepsy anyway, he recommends that I should stay on Vitamin D but I should try a smaller dose than I was taking because Vitamin D does seem to be of benefit to M.S sufferers. Also I am to have six monthly checks on my blood pressure and ECG, small price to pay as far as I am concerned.
When the news did finally sink in, I fell very silent, well for me anyway, there have been many times in my life that I have been overcome with emotion especially during the past fifteen years but when he told me that I could remain on Modafinil, I was SO happy, SO relieved, I shook his hand with both of mine, I felt my life was back in the 'now' not in limbo anymore! I now have met a fantastic Neurologist to go alongside my fantastic Doctor.
He arranged for me to have a blood/test taken which I gave that morning, this is to check if I have the HLA tissue type which is strongly associated with primary narcolepsy, strike while the iron is hot I suppose, he has also arranged for me to have an MRI scan, my first in nearly fifteen years, to see what changes have happened to the part of my brain-stem which is the part that shows the effects of M.S and also Narcolepsy, which is of interest to him in particular. I am pretty curious about that myself, am I worried, don't know, we shall see what the results will be and I shall share them with you at a later date.
I came out of our meeting feeling like a different person to the one that went in there, the darkness and the uncertainty that had been hanging about lately had started to lift and my life, our lives could resume properly once more. Having gone through all of these years with M.S has been tough, a lot of lows, physically, mentally and emotionally but then again all of us MS'rs go through the same, of course there have been plenty of highs, there have been some good times, it has not all been shit, a lot of it without question but by no means all of it. I am a very different person to the person I once was, fundamentally I am still a really nice guy, but there have been times when I have been a total bastard, virtually ALWAYS beyond my control and thankfully, not that often. My feelings as we walked to the car after my meeting with Doctor 'Nice Guy' were mostly of total 'relief' but I suppose on reflection it was kind of a bittersweet result, not only do I have M.S but I now have Narcolepsy as part of the deal, a double whammy, 'buy one get one free'. Apart from my wife and girls, and a handful of very special friends, nobody has been aware of what I have been going through these past few months, it has been tough even just contemplating having my life thrown off course, corny, perhaps, dramatic, maybe, I don't care, that's how it felt!
By the time of my next blog, I will have been through the big metal doughnut, shown the results and discussed how things have deteriorated or not inside that thick skull of mine. I honestly can't say that I am bothered, whatever they find out, good, bad or indifferent, it will be more fascinating for the Neurologist to study than it will be for me to look at, it won't turn back the clock now will it! If anything comes from it that means the information can be used in studies of some kind, then they can use as much of my 'DATA' as they want, my brain is their's as long as I get a percentage of some of the royalties (hahaha) I reckon I'm worth a piece of that action and I would love it that they rename it, the study of this ' Bastard Thing', got much more of a ring to it than 'M.S' don't you think, and it would be so cool if people went to University to study it, get a PHD in it, see that guy over there, he went to Oxford to study Neurology and he is now a Doctor of this 'Bastard Thing', you're welcome!
One point I will make is this:-
I know that being reliant on this drug, or any other for that matter is not a good thing long term, but for the moment, if there are any risks to my health I am prepared to run those risks, if I was a young man, different story, your route map on life back then is so much different and as I am not looking for that elusive 'youth' pill anymore, just one that keeps me going, gives some order to my life, wrong as it may be to some, I just say "BRING IT ON"!
When the news did finally sink in, I fell very silent, well for me anyway, there have been many times in my life that I have been overcome with emotion especially during the past fifteen years but when he told me that I could remain on Modafinil, I was SO happy, SO relieved, I shook his hand with both of mine, I felt my life was back in the 'now' not in limbo anymore! I now have met a fantastic Neurologist to go alongside my fantastic Doctor.
He arranged for me to have a blood/test taken which I gave that morning, this is to check if I have the HLA tissue type which is strongly associated with primary narcolepsy, strike while the iron is hot I suppose, he has also arranged for me to have an MRI scan, my first in nearly fifteen years, to see what changes have happened to the part of my brain-stem which is the part that shows the effects of M.S and also Narcolepsy, which is of interest to him in particular. I am pretty curious about that myself, am I worried, don't know, we shall see what the results will be and I shall share them with you at a later date.
By the time of my next blog, I will have been through the big metal doughnut, shown the results and discussed how things have deteriorated or not inside that thick skull of mine. I honestly can't say that I am bothered, whatever they find out, good, bad or indifferent, it will be more fascinating for the Neurologist to study than it will be for me to look at, it won't turn back the clock now will it! If anything comes from it that means the information can be used in studies of some kind, then they can use as much of my 'DATA' as they want, my brain is their's as long as I get a percentage of some of the royalties (hahaha) I reckon I'm worth a piece of that action and I would love it that they rename it, the study of this ' Bastard Thing', got much more of a ring to it than 'M.S' don't you think, and it would be so cool if people went to University to study it, get a PHD in it, see that guy over there, he went to Oxford to study Neurology and he is now a Doctor of this 'Bastard Thing', you're welcome!
One point I will make is this:-
I know that being reliant on this drug, or any other for that matter is not a good thing long term, but for the moment, if there are any risks to my health I am prepared to run those risks, if I was a young man, different story, your route map on life back then is so much different and as I am not looking for that elusive 'youth' pill anymore, just one that keeps me going, gives some order to my life, wrong as it may be to some, I just say "BRING IT ON"!
So until then, be as well as you can, always question what the white coats tell you, they know a lot, but they don't know everything!!!
Bombs Away Dream Babies.XX
