Hello to everybody! So much time passed since I got the idea of creating this blog, almost 8 years. That’s why, first of all, I’d like to thank everyone who visited my site and everyone who followed me on different social networks. Thank you to all of my dear readers. And yes, I decided to open an English version of this blog for those who don’t understand Russian quite well. So, Ladies and Gentlemen – welcome.
This blog was designed and developed as a source where you can find the information about multiple sclerosis, how to struggle with this disease and overcome it, how to recover after relapses and what medicine you can and should take. As many of us already know, judging by your own experience, it is not so easy and unambiguously.
Unfortunately. It is even more complicated and confusing for me because I can’t consider my disease as multiple sclerosis. Yeah, yeah, my illness, the diagnosis, sounds like demyelinating disease of the central nervous system. What does it mean exactly? Does it have any advantages in comparison with multiple sclerosis? It means that I don’t have multiple sclerosis, but my brain suffers from progressing demyelination. The symptomatology is the same: implacable deterioration of motor and other functions connected with destruction of myelin sheath of central nervous system.
What about advantages? There aren’t any of them except the only fact that you can’t take part in government programme of medical supplying. I can only buy Betaferon and Copaxone and etc., I can’t get them for free. I don’t think that is such a bad thing. Yes, probable, the speed of disease progression will increase, but, anyway, taking into consideration a bunch of side effects and the fact that none of this drugs can cause remyelination, this disadvantage doesn’t seem so crucial. But! My dear reader, I don’t recommend you to do as I did – avoid following doctor’s advice, common standards, medicine – because what I’ve done I can’t help but calling it sheer foolishness.
So, let me introduce myself for those ones who don’t know me yet and came here for the first time – I am Ilya Nikolaevich (my first name is Ilya, my middle name is Nikolaevich). I’m 28 years old at the moment of writing this article. The first problems with health started at the age of 6-7. I noticed it when I began stumbling, losing my balance and falling down from time to time. Now I realize that my footstep was moving badly occasionally, and that caused my falls, although nobody understood this simple truth back then. I went to hospitals and sanatoriums, and my first diagnosis was spinal curvature. Later, at the age of about 13 (I can’t recall the exact time) I was sent to take MRI (Magnetic Resonance Imaging) where it was possible to see that a part of my brain was demyelinated.
I continued visiting all these endless sanatoriums and hospitals, I went to Moscow for examination and to the health center in Anapa called Kuban. The disease didn’t make any progress till 16, and the doctors decided that it might be related to genetics: the part of my brain isn’t covered with myeline due to some unknown genetic deviation, and that, perhaps, the illness wouldn’t progress any more.
At the age of 16 it became obvious that it was progressing at very high speed. My legs began moving really badly, I obtained enormous fatigue, and I walked very little.
I remember that it was the time of high school, 9-11 grades, lots of lessons, teachers heaped up with homework, everybody was talking about this new exam EGE (the Unified State Exam) which my classmates were to take. Yes, it was the very first EGE in Russia at that moment. All the 11 graders were choosing additional courses, even my brother started attending the Russian language classes. He didn’t have any problems with his studying except this subject – the Russian Language. While everybody was fussing and running about, can you guess what I was doing? I was sleeping with my hands together on the desk. I was sleeping because it took me 1.5 km. to get to school from home, and I could barely walk 100 metres. Fatigue caused by multiple sclerosis with great demyelination is absolutely an awful thing and you can’t escape from it.
It is pretty funny that one year earlier, at the age of 14, I walked 10 km along the river without any effort just to go fishing.
Eventually, I took the EGE with a good grade. I remember sitting on the chair on my graduation day because I could barely stand on my feet. I’m not sure, but maybe you can’t find my picture in the year album. The next step was college. I didn’t want to go to college at all, no, I’d like to say that I didn’t have any desire to go to a regular college. Due to the fact that there are no free-barrier places throughout Russia, people in the wheelchairs turn into heroes that are considered being crazier than any other fiction characters from famous movies like the Mad Max, for example.
If you are in a wheelchair, your way to work, shop will take you so many efforts that you’d wish not to leave the threshold of your home. That is a real life in Russia for disabled and handicapped people.
Finally, I chose one college with long distance attendance which I had to leave because of the disease progression. I liked this method of studying. Despite the fact that the quality was pretty bad it provided me with one very crucial thing – selection.
As many of you know, there are two types of medicine – traditional one which is offered to you when you go to hospital and alternative medicine which isn’t acknowledged by professional doctors due to the lack of statistics data, impossibility of adequate explanations and weirdness of the methods themselves. For instance, getting intravenous therapy is acknowledged as official medicine, whereas visiting a bee-garden in order to catch some bees and stick them in your body is accepted as alternative medicine.
So, baseline is:
I’m in a wheelchair due to the disease progression since 21 (I move around the house crawling, it’s difficult for me to stand let alone walking which is more challenging to accomplish. It’s almost impossible to go out, only if to crawl to the bench and take up a position there).
The only available scientific method was a method of experiment, or a method of selection, as I call it by myself. The only experimental subject is me. The only experimentalist is again me. 10 years of life plus a great number of various, completely stupid at times, methods for constant selection and modifications.
As you may guess, my dear reader, my life has been rather full of events lately, I have something to tell you about. The current practice which I’m doing is named “4.0”.
And now it’s high time to say “second of all”. Those 10 years of searching and experimenting took me somewhere, I feel this way. The situation is improving slowly since Decemeber, 2015, when I started walking with a cane. That’s why I made a decision to publish the results of my little motor test in this blog on the 9-11th day of every single month.
Will I be able to recover completely? Will I be able to move properly? Will I lose this battle? Will I be forced to seek something faster, better and more aggressive? The time will show. Join in – it’ll be a great fun
This blog was designed and developed as a source where you can find the information about multiple sclerosis, how to struggle with this disease and overcome it, how to recover after relapses and what medicine you can and should take. As many of us already know, judging by your own experience, it is not so easy and unambiguously.
Unfortunately. It is even more complicated and confusing for me because I can’t consider my disease as multiple sclerosis. Yeah, yeah, my illness, the diagnosis, sounds like demyelinating disease of the central nervous system. What does it mean exactly? Does it have any advantages in comparison with multiple sclerosis? It means that I don’t have multiple sclerosis, but my brain suffers from progressing demyelination. The symptomatology is the same: implacable deterioration of motor and other functions connected with destruction of myelin sheath of central nervous system.
What about advantages? There aren’t any of them except the only fact that you can’t take part in government programme of medical supplying. I can only buy Betaferon and Copaxone and etc., I can’t get them for free. I don’t think that is such a bad thing. Yes, probable, the speed of disease progression will increase, but, anyway, taking into consideration a bunch of side effects and the fact that none of this drugs can cause remyelination, this disadvantage doesn’t seem so crucial. But! My dear reader, I don’t recommend you to do as I did – avoid following doctor’s advice, common standards, medicine – because what I’ve done I can’t help but calling it sheer foolishness.
So, let me introduce myself for those ones who don’t know me yet and came here for the first time – I am Ilya Nikolaevich (my first name is Ilya, my middle name is Nikolaevich). I’m 28 years old at the moment of writing this article. The first problems with health started at the age of 6-7. I noticed it when I began stumbling, losing my balance and falling down from time to time. Now I realize that my footstep was moving badly occasionally, and that caused my falls, although nobody understood this simple truth back then. I went to hospitals and sanatoriums, and my first diagnosis was spinal curvature. Later, at the age of about 13 (I can’t recall the exact time) I was sent to take MRI (Magnetic Resonance Imaging) where it was possible to see that a part of my brain was demyelinated.
I continued visiting all these endless sanatoriums and hospitals, I went to Moscow for examination and to the health center in Anapa called Kuban. The disease didn’t make any progress till 16, and the doctors decided that it might be related to genetics: the part of my brain isn’t covered with myeline due to some unknown genetic deviation, and that, perhaps, the illness wouldn’t progress any more.
At the age of 16 it became obvious that it was progressing at very high speed. My legs began moving really badly, I obtained enormous fatigue, and I walked very little.
I remember that it was the time of high school, 9-11 grades, lots of lessons, teachers heaped up with homework, everybody was talking about this new exam EGE (the Unified State Exam) which my classmates were to take. Yes, it was the very first EGE in Russia at that moment. All the 11 graders were choosing additional courses, even my brother started attending the Russian language classes. He didn’t have any problems with his studying except this subject – the Russian Language. While everybody was fussing and running about, can you guess what I was doing? I was sleeping with my hands together on the desk. I was sleeping because it took me 1.5 km. to get to school from home, and I could barely walk 100 metres. Fatigue caused by multiple sclerosis with great demyelination is absolutely an awful thing and you can’t escape from it.It is pretty funny that one year earlier, at the age of 14, I walked 10 km along the river without any effort just to go fishing.
Eventually, I took the EGE with a good grade. I remember sitting on the chair on my graduation day because I could barely stand on my feet. I’m not sure, but maybe you can’t find my picture in the year album. The next step was college. I didn’t want to go to college at all, no, I’d like to say that I didn’t have any desire to go to a regular college. Due to the fact that there are no free-barrier places throughout Russia, people in the wheelchairs turn into heroes that are considered being crazier than any other fiction characters from famous movies like the Mad Max, for example.
If you are in a wheelchair, your way to work, shop will take you so many efforts that you’d wish not to leave the threshold of your home. That is a real life in Russia for disabled and handicapped people.
Finally, I chose one college with long distance attendance which I had to leave because of the disease progression. I liked this method of studying. Despite the fact that the quality was pretty bad it provided me with one very crucial thing – selection.
As many of you know, there are two types of medicine – traditional one which is offered to you when you go to hospital and alternative medicine which isn’t acknowledged by professional doctors due to the lack of statistics data, impossibility of adequate explanations and weirdness of the methods themselves. For instance, getting intravenous therapy is acknowledged as official medicine, whereas visiting a bee-garden in order to catch some bees and stick them in your body is accepted as alternative medicine.
So, baseline is:
The only available scientific method was a method of experiment, or a method of selection, as I call it by myself. The only experimental subject is me. The only experimentalist is again me. 10 years of life plus a great number of various, completely stupid at times, methods for constant selection and modifications.
As you may guess, my dear reader, my life has been rather full of events lately, I have something to tell you about. The current practice which I’m doing is named “4.0”.
And now it’s high time to say “second of all”. Those 10 years of searching and experimenting took me somewhere, I feel this way. The situation is improving slowly since Decemeber, 2015, when I started walking with a cane. That’s why I made a decision to publish the results of my little motor test in this blog on the 9-11th day of every single month.
Will I be able to recover completely? Will I be able to move properly? Will I lose this battle? Will I be forced to seek something faster, better and more aggressive? The time will show. Join in – it’ll be a great fun
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