There will be some actual research on MRI negative MS?
There are various numbers floating around out there - 1 in 5 develop MS within 20 years, that's 20%. It can and does exist.
I can appreciate the folks who try to console us MRI negative peeps that the likelihood of this happening is very low, especially the longer one has symptoms, but it's not a consolation because that reality does exist for 20% eventually. Those are the people who were counted and diagnosed.
Many of us feel like we really aren't counted, because we're dismissed as having nothing, often for many, many years. What happens to the people who aren't counted, or ever diagnosed? Do they just disappear?
MRI negatives get lost to the system, I'm guessing because this isn't an active area of research. The return on investment isn't there - just like for rare disease like neurosarcoid - and a patient is lucky to have a handful of doctors to choose from in the entire country who have experience diagnosing and/or treating it.
There is scant information on this, and what does exist slots MRI negatives into possible categories like secondary progressive or primary progressive, where treatment options are more limited or non-existent, and the condition less inflammatory in nature.
I have noticed one other frequent comment on MRI negative and that is the longer someone has symptoms without MRI evidence, the less likely it is they have MS. This wouldn't exactly be true for someone coming into the medical community with their issues 20 years after the first symptoms occurred. If many of these people get lost early on without care (like myself), the chances of it getting caught in a later stage that is more likely an MRI negative stage is higher.
There are a lot of details not taken into consideration with these numbers. Many of us in our younger years, with milder symptoms, didn't have the time or money to be seen by doctors. Lack of health insurance, lack of access to adequate medical care, inability to take time off of work and family responsibilities, lack of concern for little oddities that all seem unrelated until they pile up later in life . . . all of this plays a part.
Considering how little time a neuro has to spend with a patient, and how little history actually does get recorded during these visits (I've only been asked my previous history by ONE neurologist out of all four), I have serious doubts about the current information available on MRI negative MS cases.
Current diagnostic protocols select for a subset of MS patients whose conditions can be monitored. This is where the profit lies. Those of us who don't fit that pattern are sort of lost to the entire neurological research community until we do fit, or some compassionate doctor sees us as an individual rather than a statistic, and decides to do something about it.
I think there are a lot more MRI negative cases out there than anyone currently believes. Just my 2 centavos.
I hope that some day, there is more information available on people with MRI negative MS. Until someone studies it, nobody falling into this particular subset counts.
There are various numbers floating around out there - 1 in 5 develop MS within 20 years, that's 20%. It can and does exist.
I can appreciate the folks who try to console us MRI negative peeps that the likelihood of this happening is very low, especially the longer one has symptoms, but it's not a consolation because that reality does exist for 20% eventually. Those are the people who were counted and diagnosed.
Many of us feel like we really aren't counted, because we're dismissed as having nothing, often for many, many years. What happens to the people who aren't counted, or ever diagnosed? Do they just disappear?
MRI negatives get lost to the system, I'm guessing because this isn't an active area of research. The return on investment isn't there - just like for rare disease like neurosarcoid - and a patient is lucky to have a handful of doctors to choose from in the entire country who have experience diagnosing and/or treating it.
There is scant information on this, and what does exist slots MRI negatives into possible categories like secondary progressive or primary progressive, where treatment options are more limited or non-existent, and the condition less inflammatory in nature.
I have noticed one other frequent comment on MRI negative and that is the longer someone has symptoms without MRI evidence, the less likely it is they have MS. This wouldn't exactly be true for someone coming into the medical community with their issues 20 years after the first symptoms occurred. If many of these people get lost early on without care (like myself), the chances of it getting caught in a later stage that is more likely an MRI negative stage is higher.
There are a lot of details not taken into consideration with these numbers. Many of us in our younger years, with milder symptoms, didn't have the time or money to be seen by doctors. Lack of health insurance, lack of access to adequate medical care, inability to take time off of work and family responsibilities, lack of concern for little oddities that all seem unrelated until they pile up later in life . . . all of this plays a part.
Considering how little time a neuro has to spend with a patient, and how little history actually does get recorded during these visits (I've only been asked my previous history by ONE neurologist out of all four), I have serious doubts about the current information available on MRI negative MS cases.
Current diagnostic protocols select for a subset of MS patients whose conditions can be monitored. This is where the profit lies. Those of us who don't fit that pattern are sort of lost to the entire neurological research community until we do fit, or some compassionate doctor sees us as an individual rather than a statistic, and decides to do something about it.
I think there are a lot more MRI negative cases out there than anyone currently believes. Just my 2 centavos.
I hope that some day, there is more information available on people with MRI negative MS. Until someone studies it, nobody falling into this particular subset counts.
The above is the reason for my name here.
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