My MS Story
MY MS STORY.
2002 to 2006: From first MS symptoms to diagnosis.
In around 2002, when I was in junior college, I was down with high temperature. It was a viral, as best as I can remember. The viral had subsided as expected but eventually I started experiencing a numb patch on my back, the spine, to be precise.There was also a tingling sensation with the numbness. I took it to be some minor skin infection and that went unnoticed. While this was still there, I started experiencing something very similar on my left leg. I didn't like it much this time. Still thinking that it is some skin infection sort of a thing, I consulted a dermatologist. It never struck me, somehow, that numbness could be associated with nerves. More so, I could never, in my weirdest dreams, imagine that this would lead to a neurological condition so severe. The major reason being I had never ever heard of Multiple Sclerosis before, may be because of the least incidence of the condition in tropical or Asian countries, where I come from.
However, the dermatologist, being from a medical background, sensed the neurological association and advised me to see a neurologist. This was the time when I got a bit alarmed at the word "neurologist". Though I am not a medico, it didn't go down well with me and my family. Nevertheless, subsequently there were consultations with more than one neurologists. I was very often put on solumedrol in the early years and this was before diagnosis. Solumedrol was working well, my minor symptoms used to subside completely and this happened quite a few times: I used to experience a little numbness and tingling sensation, was administered with solumedrol by one of the neurologists and was good to go. My family and me were still unaware of the root cause of this. We did not demand a diagnosis of this from the doctors partly because we never realized that a condition like this existed specially in our region and also because, we thought it might be a minor issue. The doctors also tried to diagnose the condition through MRIs and a lumbar puncture, testing my spinal fluid but could not reach a diagnosis because of the unclear lesions in the reports. At this point of time, I was gradually experiencing increased fatigue with the numbness at every relapse still clueless of what was happening to me. About 3 to 4 years saw these repeated events, with unnoticeable but sure symptomatic deterioration in me.
It took quite a few MRIs to see the lesions clear enough and a few years for my condition to be diagnosed. In the middle of 2006, one of the neurologists uttered the words "Multiple Sclerosis". This was new to us and we thought it can't be here to stay, before she said that this is incurable, though not life threatening. By this time, my major concern was fatigue. We were still skeptical about the "incurable" part of it because there was nothing major about my symptoms which seemed out of control.
As soon as the neurologist diagnosed MS, she put me on a course of Mitoxantrone for a period of about 6 months A dose/intravenous injection was administered with an interval of 3 months, evrytime time after I had an ECG done. She said that it is important to keep the functioning of the heart under check when you are under the treatment of Mitoxantrone.
There was some amount of numbness in my left thigh, which had not yet altered my gait. This, along with some fatigue was all that I was experiencing at this time.
2006 to 2010: Treatments for MS that I had tried:
After the diagnosis in 2006 (which was not taken seriously enough), I continued to have increased difficulty in walking. There had been quite a few attacks which went quite unnoticed. I was in need of unilateral support (support on one hand) and subsequently bilateral. By 2010, I used a wheelchair when I had to take long walks or while travelling. In 2010 January, I went for a stem cell treatment in China, which was supposed to be a “cure” rather than a treatment.. This hospital situated in Guangzhou in China had a marketing branch in Delhi, India through which I had researched about the treatment and went for it. I was given 5 doses of umbilical cord blood stem cells there, two in my spinal cord through lumbar puncture and three through IV. I was told that the Mesenchymal cells present in these umbilical stem cells “might” grow to form different tissues in the body and in my case into the degenerated myelin sheath. I went for this process inspite of it being under trials (which still is) because I was assured that it was safe enough and would only show no results in the worst case. It was during their diagnosis that it turned out that I had gone into the Progressive Stage. Nevertheless, there was no positive reault from this treatment either.
2010 till date:Looking for a “cure”not just a treatment..
I have been on a wheel chair for quite some time now, working from home and changing jobs too! As for the health part, as happens a in the Progressive MS, my condition is very slowly and steadily worsening. I did not take an MRI after 2010. Neither did I go for any treatments in the modern medicine. I have not been on any medication because I am very frantically looking for a cure. When allopathy has already declared that it does not serve a cure, I thought I’d rather try an alternative medicine like Unani.
The Unani medicine which I was told, was originated from Greece, originally known as Yunaan is practiced a lot here in India, At first I did not happen to look at this alternative as I expected a cure from the modern medicine itself. When the modern medicine failed my expectations and I saw that Yunani medicine was taking care of many other ailments, especially without any side effects and risks like chemo, lumbar puncture, or even IVs,Another important thing to know about this Unani medicine is that it is very slow and takes a very long time to show results. I decided to go for it. These are simple pastes which are sweet in taste which I am taking. I am, somehow convinced that this will help me out, as a cure, though I may have to take these for life.
I have started taking this medication around 15 days back and so far so good. By good I mean there have been no side or bad effects thus far. Experiencing an overactive digestive system which was not so active earlier., including an improved appetite, which was very poor. I shall keep my readers informed about the progress that I witness during this medication.
(Updated on 29th January 2016)
Find my further quest for getting over my Multiple Sclerosis here.
Lessons one should take from my MS story:
1. Chronic conditions generally attack when the body is the least immune like in a fever or viral, etc.
2. Be informed and aware of basics of things going on not just around you but around the world. It helps to be the jack of all trades.
3. Be alert in identifying situations which need your serious attention either regarding yourself or people close to you. Act early and accurately. Early action can make a lot of difference later.
4. Even if you get into such situations, keep researching and trying for new treatments or better still, keep trying to find a cure, staying within safety limits.
In around 2002, when I was in junior college, I was down with high temperature. It was a viral, as best as I can remember. The viral had subsided as expected but eventually I started experiencing a numb patch on my back, the spine, to be precise.There was also a tingling sensation with the numbness. I took it to be some minor skin infection and that went unnoticed. While this was still there, I started experiencing something very similar on my left leg. I didn't like it much this time. Still thinking that it is some skin infection sort of a thing, I consulted a dermatologist. It never struck me, somehow, that numbness could be associated with nerves. More so, I could never, in my weirdest dreams, imagine that this would lead to a neurological condition so severe. The major reason being I had never ever heard of Multiple Sclerosis before, may be because of the least incidence of the condition in tropical or Asian countries, where I come from.
However, the dermatologist, being from a medical background, sensed the neurological association and advised me to see a neurologist. This was the time when I got a bit alarmed at the word "neurologist". Though I am not a medico, it didn't go down well with me and my family. Nevertheless, subsequently there were consultations with more than one neurologists. I was very often put on solumedrol in the early years and this was before diagnosis. Solumedrol was working well, my minor symptoms used to subside completely and this happened quite a few times: I used to experience a little numbness and tingling sensation, was administered with solumedrol by one of the neurologists and was good to go. My family and me were still unaware of the root cause of this. We did not demand a diagnosis of this from the doctors partly because we never realized that a condition like this existed specially in our region and also because, we thought it might be a minor issue. The doctors also tried to diagnose the condition through MRIs and a lumbar puncture, testing my spinal fluid but could not reach a diagnosis because of the unclear lesions in the reports. At this point of time, I was gradually experiencing increased fatigue with the numbness at every relapse still clueless of what was happening to me. About 3 to 4 years saw these repeated events, with unnoticeable but sure symptomatic deterioration in me.
It took quite a few MRIs to see the lesions clear enough and a few years for my condition to be diagnosed. In the middle of 2006, one of the neurologists uttered the words "Multiple Sclerosis". This was new to us and we thought it can't be here to stay, before she said that this is incurable, though not life threatening. By this time, my major concern was fatigue. We were still skeptical about the "incurable" part of it because there was nothing major about my symptoms which seemed out of control.
As soon as the neurologist diagnosed MS, she put me on a course of Mitoxantrone for a period of about 6 months A dose/intravenous injection was administered with an interval of 3 months, evrytime time after I had an ECG done. She said that it is important to keep the functioning of the heart under check when you are under the treatment of Mitoxantrone.
There was some amount of numbness in my left thigh, which had not yet altered my gait. This, along with some fatigue was all that I was experiencing at this time.
2006 to 2010: Treatments for MS that I had tried:
After the diagnosis in 2006 (which was not taken seriously enough), I continued to have increased difficulty in walking. There had been quite a few attacks which went quite unnoticed. I was in need of unilateral support (support on one hand) and subsequently bilateral. By 2010, I used a wheelchair when I had to take long walks or while travelling. In 2010 January, I went for a stem cell treatment in China, which was supposed to be a “cure” rather than a treatment.. This hospital situated in Guangzhou in China had a marketing branch in Delhi, India through which I had researched about the treatment and went for it. I was given 5 doses of umbilical cord blood stem cells there, two in my spinal cord through lumbar puncture and three through IV. I was told that the Mesenchymal cells present in these umbilical stem cells “might” grow to form different tissues in the body and in my case into the degenerated myelin sheath. I went for this process inspite of it being under trials (which still is) because I was assured that it was safe enough and would only show no results in the worst case. It was during their diagnosis that it turned out that I had gone into the Progressive Stage. Nevertheless, there was no positive reault from this treatment either.
2010 till date:Looking for a “cure”not just a treatment..
I have been on a wheel chair for quite some time now, working from home and changing jobs too! As for the health part, as happens a in the Progressive MS, my condition is very slowly and steadily worsening. I did not take an MRI after 2010. Neither did I go for any treatments in the modern medicine. I have not been on any medication because I am very frantically looking for a cure. When allopathy has already declared that it does not serve a cure, I thought I’d rather try an alternative medicine like Unani.
The Unani medicine which I was told, was originated from Greece, originally known as Yunaan is practiced a lot here in India, At first I did not happen to look at this alternative as I expected a cure from the modern medicine itself. When the modern medicine failed my expectations and I saw that Yunani medicine was taking care of many other ailments, especially without any side effects and risks like chemo, lumbar puncture, or even IVs,Another important thing to know about this Unani medicine is that it is very slow and takes a very long time to show results. I decided to go for it. These are simple pastes which are sweet in taste which I am taking. I am, somehow convinced that this will help me out, as a cure, though I may have to take these for life.
I have started taking this medication around 15 days back and so far so good. By good I mean there have been no side or bad effects thus far. Experiencing an overactive digestive system which was not so active earlier., including an improved appetite, which was very poor. I shall keep my readers informed about the progress that I witness during this medication.
(Updated on 29th January 2016)
Find my further quest for getting over my Multiple Sclerosis here.
Lessons one should take from my MS story:
1. Chronic conditions generally attack when the body is the least immune like in a fever or viral, etc.
2. Be informed and aware of basics of things going on not just around you but around the world. It helps to be the jack of all trades.
3. Be alert in identifying situations which need your serious attention either regarding yourself or people close to you. Act early and accurately. Early action can make a lot of difference later.
4. Even if you get into such situations, keep researching and trying for new treatments or better still, keep trying to find a cure, staying within safety limits.
