#CCSVI the way M S really effects each individual #multiplesclerosis #ms #multscler the way Multiple Sclerosis has effected my life is enormous, fucking enormous. I feel it needed a profanity, to emphasise just how strongly I feel about this. before Multiple Sclerosis I used to ride motor bikes, snow ski, water ski, scuba dive and talk the hind legs off a donkey. At the moment I can do none of these things. but I am hoping that CCSVI ccsvi.co.uk or more accurately the Liberation procedure, that corrects CCSVI. will allow at least some of these things to be within my grasp again. CCSVI is not a complete cure for Multiple Sclerosis, (not yet anyhow). but many of the symptoms seem to be much improved after Liberation. the evidence that it has an effect would seem to be overwhelming. many people have had fabulous results and some not so much. See ccsvi-tracking.com/index.php , for up to date results. the graphs show exactly what percentage of procedures have had fabulous results, very good results, good results and not so good results. Click the graph on the left hand side of the screen, to see the results in detail. In the last few weeks, my Multiple Sclerosis symptoms have got considerably worse.
Walking: Walking more than a yard or so, even with the help of my rollater, is very, very difficult. To the point that, I probably only walk about 50 yards in a complete day and most of this is to the loo and back. which seems to be getting more and more frequent, especially at night. I had a massage about two weeks ago and since then my quads are very uncomfortable. My legs do not know if they want to be straight or bent. I can’t decide if my Multiple Sclerosis is going downhill or if the massage released some toxins in my muscles that now out and free will come good in the end. Whatever that means. Mind you, if things were going to ” come good”, I think they would have done it by now. My legs have recently been so uncomfortable, especially the quads, all the time, so I just hope this is a temporary thing and things will get better again.
Speech: My speech is now so bad, it is virtually useless, which is very frustrating and very, very, very depressing. Single words are not too bad, but stringing together a sentence, takes the same amount of energy as a 100 yard sprint. which is why my speech, often sounds so breathless, if you can understand me at all. Most of the time I cannot be bothered to answer or to express my feelings, because it takes too much effort to do so. Lack of speech is something you don’t think about, until you miss it for real, then it is frustrating to say the very least. Especially as your brain is still working at normal pace, my voice may sound like I am a little doolaly (slow, pronunciation not very good and the tone of my voice sounds strange). as I used to be a professional Disc Jockey, I am probably more critical than most people. but believe me when I say my voice is no longer very good, I mean it is not very good at all.
Dexterity: My dexterity is not good any longer. particularly my fine motor skills (writing, doing up buttons, etc). I struggle to get dressed in the morning without help. Luckily for me my wife helps me most mornings, so dressing is not as traumatic as it would be otherwise.
Fatigue: I am now sleeping probably 20 hours out of every 24 but this maybe due to the drug Baclofen which I have been taking for muscle stiffness after it was prescribed by my Neurologist but I am going to mention the fatigue to him on my next appointment, so he may decide to change me on to a different drug, so I hope the fatigue will be less then. At the moment it is intolerable, so again I am hoping that things will improve. In the last few weeks, my Multiple Sclerosis symptoms have got considerably worse.
Walking: Walking more than a yard or so, even with the help of my rollater, is very, very difficult. To the point that, I probably only walk about 50 yards in a complete day and most of this is to the loo and back. which seems to be getting more and more frequent, especially at night. I had a massage about two weeks ago and since then my quads are very uncomfortable. My legs do not know if they want to be straight or bent. I can’t decide if my Multiple Sclerosis is going downhill or if the massage released some toxins in my muscles that now out and free will come good in the end. Whatever that means. Mind you, if things were going to ” come good”, I think they would have done it by now. My legs have recently been so uncomfortable, especially the quads, all the time, so I just hope this is a temporary thing and things will get better again.
Speech: My speech is now so bad, it is virtually useless, which is very frustrating and very, very, very depressing. Single words are not too bad, but stringing together a sentence, takes the same amount of energy as a 100 yard sprint. which is why my speech, often sounds so breathless, if you can understand me at all. Most of the time I cannot be bothered to answer or to express my feelings, because it takes too much effort to do so. Lack of speech is something you don’t think about, until you miss it for real, then it is frustrating to say the very least. Especially as your brain is still working at normal pace, my voice may sound like I am a little doolaly (slow, pronunciation not very good and the tone of my voice sounds strange). as I used to be a professional Disc Jockey, I am probably more critical than most people. but believe me when I say my voice is no longer very good, I mean it is not very good at all.
Dexterity: My dexterity is not good any longer. particularly my fine motor skills (writing, doing up buttons, etc). I struggle to get dressed in the morning without help. Luckily for me my wife helps me most mornings, so dressing is not as traumatic as it would be otherwise.
Fatigue: I have recently been sleeping or dozing for 20 hours out of every 24. but this may be due to the drug Baclofen which my Neurologist prescribed for muscle stiffness but one of its side effects is drowsiness, so I will mention this to the Neurologist the next time I see him and he therefore may decide to prescribe me a different drug for muscle stiffness and I am hoping that the fatigue will therefore improve and I will once again be able to stay awake for more than a few minutes at a time. Fatigue is one of the most debilitating parts of M S. Until I experienced it, I did not realise how much M S fatigue effects people, it is like no fatigue you have experienced before.
There are more M S symptoms but for me they are the worst, each person has their own list of worst symptoms for them. you never see two MSers who suffer from the same symptoms, everyone is different, that is one of the things that makes M S so difficult to find a cure for, the fact that nobody is the same.
But CCSVI is likely to change that, here’s hoping anyhow. Paulo Zamboni and his CCSVI is likely to change the way we think about Multiple Sclerosis, despite the medical profession being so against it. Because it is not good for them financially. if not so many people have M S they will not sell as many drugs for M S, which is why the medical profession is not very sympathetic to people with M S.
Well I have said my peace, it is now time for me to leave you to absorb what I have said.