Yes, it has been shown how people are using the Internet more to diagnose their health problems. But, I see a disturbing trend among people with (perhaps) multiple sclerosis--in blogs, on Face book, Twitter, they seem to be self-diagnosing their disease, their stage, their therapy and even their prognosis!
They go on and on about what symptom they have and so many say they are "progressive." Yet, when I ask how long they have had MS or when they were diagnosed, it usually has only been a year or two. SOME do not even have a medical diagnosis, in fact some have not yet seen a neurologist!
So, I have begun keeping track of them and when they remit or their symptoms go away, they say their diet fixed the MS. And even those with an MRI official diagnosis, will attribute a remitting symptom to something other than the disease itself just doing what it does.
Now they KNOW what they are doing because they try to never mention when they were diagnosed. It would be funny, if it were not so sad for meaningful MS research. One person wrote of having progressive MS (FYI: ALL MS is progressive, that is different from the MS STAGE of PMS which is rare and does not waste time.) then suddenly went to a all but cured state and now has symptoms on/off. Sigh.
The misinformation about MS is now exploding all over the Internet. What started as a helpful tool for people with MS, has become a dagger of deception. I'm begging you---see a neurologist, read people's experiences with a grain (or TWO) of salt, and stay close to well known sites like Johns Hopkins or Mayo Clinic or The National MS Society. I am no advocate for their intentions, but their medical info should be based on well researched FACTS.
Just surf the Internet with caution. Brass and Ivory is one of the most MS info-rich blogs I know. Take the rest like mine (at least until you know them well) as what they are---one person's experience. Now, GO! Surf! And watch out for sharks.
Sunday, October 9, 2011
MS Info Surfing, Wear a Vest. Blog? Facebook?
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Yes, it has been shown how people are using the Internet more to diagnose their health problems. But, I see a disturbing trend among people with (perhaps) multiple sclerosis--in blogs, on Face book, Twitter, they seem to be self-diagnosing their disease, their stage, their therapy and even their prognosis!
They go on and on about what symptom they have and so many say they are "progressive." Yet, when I ask how long they have had MS or when they were diagnosed, it usually has only been a year or two. SOME do not even have a medical diagnosis, in fact some have not yet seen a neurologist!
So, I have begun keeping track of them and when they remit or their symptoms go away, they say their diet fixed the MS. And even those with an MRI official diagnosis, will attribute a remitting symptom to something other than the disease itself just doing what it does.
Now they KNOW what they are doing because they try to never mention when they were diagnosed. It would be funny, if it were not so sad for meaningful MS research. One person wrote of having progressive MS (FYI: ALL MS is progressive, that is different from the MS STAGE of PMS which is rare and does not waste time.) then suddenly went to a all but cured state and now has symptoms on/off. Sigh.
The misinformation about MS is now exploding all over the Internet. What started as a helpful tool for people with MS, has become a dagger of deception. I'm begging you---see a neurologist, read people's experiences with a grain (or TWO) of salt, and stay close to well known sites like Johns Hopkins or Mayo Clinic or The National MS Society. I am no advocate for their intentions, but their medical info should be based on well researched FACTS.
Just surf the Internet with caution. Brass and Ivory is one of the most MS info-rich blogs I know. Take the rest like mine (at least until you know them well) as what they are---one person's experience. Now, GO! Surf! And watch out for sharks.
Yes, it has been shown how people are using the Internet more to diagnose their health problems. But, I see a disturbing trend among people with (perhaps) multiple sclerosis--in blogs, on Face book, Twitter, they seem to be self-diagnosing their disease, their stage, their therapy and even their prognosis!
They go on and on about what symptom they have and so many say they are "progressive." Yet, when I ask how long they have had MS or when they were diagnosed, it usually has only been a year or two. SOME do not even have a medical diagnosis, in fact some have not yet seen a neurologist!
So, I have begun keeping track of them and when they remit or their symptoms go away, they say their diet fixed the MS. And even those with an MRI official diagnosis, will attribute a remitting symptom to something other than the disease itself just doing what it does.
Now they KNOW what they are doing because they try to never mention when they were diagnosed. It would be funny, if it were not so sad for meaningful MS research. One person wrote of having progressive MS (FYI: ALL MS is progressive, that is different from the MS STAGE of PMS which is rare and does not waste time.) then suddenly went to a all but cured state and now has symptoms on/off. Sigh.
The misinformation about MS is now exploding all over the Internet. What started as a helpful tool for people with MS, has become a dagger of deception. I'm begging you---see a neurologist, read people's experiences with a grain (or TWO) of salt, and stay close to well known sites like Johns Hopkins or Mayo Clinic or The National MS Society. I am no advocate for their intentions, but their medical info should be based on well researched FACTS.
Just surf the Internet with caution. Brass and Ivory is one of the most MS info-rich blogs I know. Take the rest like mine (at least until you know them well) as what they are---one person's experience. Now, GO! Surf! And watch out for sharks.
Yes, it has been shown how people are using the Internet more to diagnose their health problems. But, I see a disturbing trend among people with (perhaps) multiple sclerosis--in blogs, on Face book, Twitter, they seem to be self-diagnosing their disease, their stage, their therapy and even their prognosis!
They go on and on about what symptom they have and so many say they are "progressive." Yet, when I ask how long they have had MS or when they were diagnosed, it usually has only been a year or two. SOME do not even have a medical diagnosis, in fact some have not yet seen a neurologist!
So, I have begun keeping track of them and when they remit or their symptoms go away, they say their diet fixed the MS. And even those with an MRI official diagnosis, will attribute a remitting symptom to something other than the disease itself just doing what it does.
Now they KNOW what they are doing because they try to never mention when they were diagnosed. It would be funny, if it were not so sad for meaningful MS research. One person wrote of having progressive MS (FYI: ALL MS is progressive, that is different from the MS STAGE of PMS which is rare and does not waste time.) then suddenly went to a all but cured state and now has symptoms on/off. Sigh.
The misinformation about MS is now exploding all over the Internet. What started as a helpful tool for people with MS, has become a dagger of deception. I'm begging you---see a neurologist, read people's experiences with a grain (or TWO) of salt, and stay close to well known sites like Johns Hopkins or Mayo Clinic or The National MS Society. I am no advocate for their intentions, but their medical info should be based on well researched FACTS.
Just surf the Internet with caution. Brass and Ivory is one of the most MS info-rich blogs I know. Take the rest like mine (at least until you know them well) as what they are---one person's experience. Now, GO! Surf! And watch out for sharks.
Yes, it has been shown how people are using the Internet more to diagnose their health problems. But, I see a disturbing trend among people with (perhaps) multiple sclerosis--in blogs, on Face book, Twitter, they seem to be self-diagnosing their disease, their stage, their therapy and even their prognosis!
They go on and on about what symptom they have and so many say they are "progressive." Yet, when I ask how long they have had MS or when they were diagnosed, it usually has only been a year or two. SOME do not even have a medical diagnosis, in fact some have not yet seen a neurologist!
So, I have begun keeping track of them and when they remit or their symptoms go away, they say their diet fixed the MS. And even those with an MRI official diagnosis, will attribute a remitting symptom to something other than the disease itself just doing what it does.
Now they KNOW what they are doing because they try to never mention when they were diagnosed. It would be funny, if it were not so sad for meaningful MS research. One person wrote of having progressive MS (FYI: ALL MS is progressive, that is different from the MS STAGE of PMS which is rare and does not waste time.) then suddenly went to a all but cured state and now has symptoms on/off. Sigh.
The misinformation about MS is now exploding all over the Internet. What started as a helpful tool for people with MS, has become a dagger of deception. I'm begging you---see a neurologist, read people's experiences with a grain (or TWO) of salt, and stay close to well known sites like Johns Hopkins or Mayo Clinic or The National MS Society. I am no advocate for their intentions, but their medical info should be based on well researched FACTS.
Just surf the Internet with caution. Brass and Ivory is one of the most MS info-rich blogs I know. Take the rest like mine (at least until you know them well) as what they are---one person's experience. Now, GO! Surf! And watch out for sharks.
Yes, it has been shown how people are using the Internet more to diagnose their health problems. But, I see a disturbing trend among people with (perhaps) multiple sclerosis--in blogs, on Face book, Twitter, they seem to be self-diagnosing their disease, their stage, their therapy and even their prognosis!
They go on and on about what symptom they have and so many say they are "progressive." Yet, when I ask how long they have had MS or when they were diagnosed, it usually has only been a year or two. SOME do not even have a medical diagnosis, in fact some have not yet seen a neurologist!
So, I have begun keeping track of them and when they remit or their symptoms go away, they say their diet fixed the MS. And even those with an MRI official diagnosis, will attribute a remitting symptom to something other than the disease itself just doing what it does.
Now they KNOW what they are doing because they try to never mention when they were diagnosed. It would be funny, if it were not so sad for meaningful MS research. One person wrote of having progressive MS (FYI: ALL MS is progressive, that is different from the MS STAGE of PMS which is rare and does not waste time.) then suddenly went to a all but cured state and now has symptoms on/off. Sigh.
The misinformation about MS is now exploding all over the Internet. What started as a helpful tool for people with MS, has become a dagger of deception. I'm begging you---see a neurologist, read people's experiences with a grain (or TWO) of salt, and stay close to well known sites like Johns Hopkins or Mayo Clinic or The National MS Society. I am no advocate for their intentions, but their medical info should be based on well researched FACTS.
Just surf the Internet with caution. Brass and Ivory is one of the most MS info-rich blogs I know. Take the rest like mine (at least until you know them well) as what they are---one person's experience. Now, GO! Surf! And watch out for sharks.
Yes, it has been shown how people are using the Internet more to diagnose their health problems. But, I see a disturbing trend among people with (perhaps) multiple sclerosis--in blogs, on Face book, Twitter, they seem to be self-diagnosing their disease, their stage, their therapy and even their prognosis!
They go on and on about what symptom they have and so many say they are "progressive." Yet, when I ask how long they have had MS or when they were diagnosed, it usually has only been a year or two. SOME do not even have a medical diagnosis, in fact some have not yet seen a neurologist!
So, I have begun keeping track of them and when they remit or their symptoms go away, they say their diet fixed the MS. And even those with an MRI official diagnosis, will attribute a remitting symptom to something other than the disease itself just doing what it does.
Now they KNOW what they are doing because they try to never mention when they were diagnosed. It would be funny, if it were not so sad for meaningful MS research. One person wrote of having progressive MS (FYI: ALL MS is progressive, that is different from the MS STAGE of PMS which is rare and does not waste time.) then suddenly went to a all but cured state and now has symptoms on/off. Sigh.
The misinformation about MS is now exploding all over the Internet. What started as a helpful tool for people with MS, has become a dagger of deception. I'm begging you---see a neurologist, read people's experiences with a grain (or TWO) of salt, and stay close to well known sites like Johns Hopkins or Mayo Clinic or The National MS Society. I am no advocate for their intentions, but their medical info should be based on well researched FACTS.
Just surf the Internet with caution. Brass and Ivory is one of the most MS info-rich blogs I know. Take the rest like mine (at least until you know them well) as what they are---one person's experience. Now, GO! Surf! And watch out for sharks.
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