JockMcTavish
04-27-2008, 11:51 AM
You know, the thing I have been most amazed at following (sort of) diagnosis, is the number of people who have, or know people that have MS. Let's put it this way, I've hardly been shouting it from the rooftops but now keep my ears much more open than before and have found it amazing just how many people are touched by this disease. Doctors, lawyers, bankers, politicians you name it - MS is in their camp! I sometimes wonder how much our eating habits (processed food etc) and environment have to do with this illness - it certainly seems on the rise in 'developed countries'................or is it just that doctors are better able to diagnose? I do think doctors are quicker to diagnose, particularly in the US - whether they're diagnosing a specific disease, or a syndrome, I'm not sure....and frankly neither are they. I can only comment on the differences between UK and US doctors - US doctors wanted me on DMDs asap, purely on the strength of an MRI (no real symptoms, just a rogue MRI) UK doctors told me that was crazy and I should wait for a hint of progression before even thinking about it. Apparently there are many things throughout your life that can result in lesions....or so my eminent UK neuro tells me. Since then - no drugs, no new lesions in 8 months, negative spinal tap and now US doctors are telling me "Er, let's wait and see for a while". They still reckon I have it, but they're not quite so sure as before. :confused:
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TXChica70
04-27-2008, 12:24 PM
I was living in The Netherlands when I was dx'd and their attitude is also a wait and see one. They don't really believe in prevention. I just thank my lucky stars the US does. I would hate to see how far the disease has to progress before my Dutch doctor did do something about it.
You're right about the 'everyone has it' thing. When I was dx'd, my mom was with me and when we returned to TX she called me about a week later and was telling me how such and such has MS or such and such's boss has MS. It's amazing. Before my diagnosis I never even knew really what MS was let alone anyone who had it. I was even approached by a woman in a store who overhead me talking about it with someone else to tell me her husband has MS - crazy.
You're right about the 'everyone has it' thing. When I was dx'd, my mom was with me and when we returned to TX she called me about a week later and was telling me how such and such has MS or such and such's boss has MS. It's amazing. Before my diagnosis I never even knew really what MS was let alone anyone who had it. I was even approached by a woman in a store who overhead me talking about it with someone else to tell me her husband has MS - crazy.
Bearygood
04-27-2008, 02:37 PM
IMHO, both. There have been articles just recently about how autoimmune diseases in general are on the rise.
Recently, I have been seriously miffed about how the number of MS patients in the US seems to have been stuck at 400,000. Just in the past year, I've seen SO many people dxed. Ironically, on the heels of my outrage, I saw someone talking about an impending survey on this number so it can be updated. AND, the source reported that the last survey was done in 1975. :mad: I haven't researched this to verify it but if it is in fact true, it would explain that fixed number for so long although it's pretty horrible for a disease that requires more attention.
Recently, I have been seriously miffed about how the number of MS patients in the US seems to have been stuck at 400,000. Just in the past year, I've seen SO many people dxed. Ironically, on the heels of my outrage, I saw someone talking about an impending survey on this number so it can be updated. AND, the source reported that the last survey was done in 1975. :mad: I haven't researched this to verify it but if it is in fact true, it would explain that fixed number for so long although it's pretty horrible for a disease that requires more attention.
MommaEMS
04-27-2008, 03:34 PM
I think that people really just don't pay attention to someone's dx unless it is someone close to them or people don't always talk about it. My Mom had breast cancer 35 years ago and so many people came out of the woodwork it seemed telling her about how they had over come it or someone very close to them that had. People that lived on the same street as us and we had no idea. Things were different then and cancer was something people didn't like to talk about especially breast cancer. Mom survived for 32 years and was an inspiration to many people and gave them hope.
Finding others with the same dx can be great for all involved. I'm very happy that I have found this site and can understand things better through all the postings. Thanks.
Finding others with the same dx can be great for all involved. I'm very happy that I have found this site and can understand things better through all the postings. Thanks.
kimpossible67
04-27-2008, 04:19 PM
I'm concerned, too. I have it, a co-worker was dx'd in '05 with ppms, another two co-workers are being tested and a friend up north, who ironically is in the same profession, is being tested as well. I have a cousin with it (I was adopted by step-father so not a blood relation) and two family members on the maternal side and one on the paternal side with MS. My grandmother had psyorisis and my g.grandfather Parkinsons and his son Lou Gehrig's disease.
MSNik
04-27-2008, 04:51 PM
Just for an FYI, the MS Society (national) has recently launched a task force for Epidemiology in order to better track MS cases, histories and projections...basically what this means is that as Bearygood said, its been almost 30 years since any real count has been done on how many of us have MS- no one really knows how many of us there are, although the MS Society states about 400,000- its probably not accurate and there are probably many more cases out there (in the USA)...
I dont think the idea of it being genetic is going to hold muh weight overall, although I have no doubt that the ability to pass on a gene which might inherently be the basis for autoimmune diseases in general might exist...meaning, that we might not be prone to passing along MS, but be prone to pass along ANY autoimmune disease possibility...too many studies have already been done on the idea of extreme genetics- tracking mothers with MS who have children and whether or not those children also get MS- its not proven to be statistically high.....but the idea of passing along immune deficiencies in general- those stats are much higher.
The society's task force is being designed to go even further...they will hopefully be able to track both the cases and the long term progression and after effects (including children being born and the possilbity of them having disease) its going to take many years to actually collect all this data- but at least the efforts are being made.
Nikki
I dont think the idea of it being genetic is going to hold muh weight overall, although I have no doubt that the ability to pass on a gene which might inherently be the basis for autoimmune diseases in general might exist...meaning, that we might not be prone to passing along MS, but be prone to pass along ANY autoimmune disease possibility...too many studies have already been done on the idea of extreme genetics- tracking mothers with MS who have children and whether or not those children also get MS- its not proven to be statistically high.....but the idea of passing along immune deficiencies in general- those stats are much higher.
The society's task force is being designed to go even further...they will hopefully be able to track both the cases and the long term progression and after effects (including children being born and the possilbity of them having disease) its going to take many years to actually collect all this data- but at least the efforts are being made.
Nikki
Nenu
04-27-2008, 06:14 PM
Agree Nikki. I don't believe this is genetic one bit. Look at my situation, and many others... not a soul in my family has MS or anything remotely close to MS.
Epidemic... I honestly do think so, at least in my part of the world. It's unreal how many people have MS here, or even crazier, how many people know someone with it. I haven't kept quiet about my diagnosis, and not a soul has asked "What is MS?" when I told them... because everyone knows this disease, and to an extent, what it can do. It's no unfamiliar at all, which in a way is comforting, but also scary that so many suffer.
Epidemic... I honestly do think so, at least in my part of the world. It's unreal how many people have MS here, or even crazier, how many people know someone with it. I haven't kept quiet about my diagnosis, and not a soul has asked "What is MS?" when I told them... because everyone knows this disease, and to an extent, what it can do. It's no unfamiliar at all, which in a way is comforting, but also scary that so many suffer.
JockMcTavish
04-27-2008, 08:48 PM
Agree Nikki. I don't believe this is genetic one bit. Look at my situation, and many others... not a soul in my family has MS or anything remotely close to MS.
Epidemic... I honestly do think so, at least in my part of the world. It's unreal how many people have MS here, or even crazier, how many people know someone with it. I haven't kept quiet about my diagnosis, and not a soul has asked "What is MS?" when I told them... because everyone knows this disease, and to an extent, what it can do. It's no unfamiliar at all, which in a way is comforting, but also scary that so many suffer.
The other thing to factor in is that in the 70s if you showed up at the docs with some numbness, you were dismissed with 2 advil and take it easy for a few days - so mild/medium MS cases were likely unrecorded. It is only with the advent of the MRI that we are really seeing the true extent of this disease. I reckon there could be at least 10X the number quoted walking around unaware. That said, there are plenty of cases of autopsy specimens having their brains covered in lesions.
Epidemic... I honestly do think so, at least in my part of the world. It's unreal how many people have MS here, or even crazier, how many people know someone with it. I haven't kept quiet about my diagnosis, and not a soul has asked "What is MS?" when I told them... because everyone knows this disease, and to an extent, what it can do. It's no unfamiliar at all, which in a way is comforting, but also scary that so many suffer.
The other thing to factor in is that in the 70s if you showed up at the docs with some numbness, you were dismissed with 2 advil and take it easy for a few days - so mild/medium MS cases were likely unrecorded. It is only with the advent of the MRI that we are really seeing the true extent of this disease. I reckon there could be at least 10X the number quoted walking around unaware. That said, there are plenty of cases of autopsy specimens having their brains covered in lesions.
MSNik
04-27-2008, 09:09 PM
Jock, Advil was introduced in 1984.....the MRI was introduced in the 50s and not used for imaging the brain until 1985...so as you stated "in the 70s if you showed up at the docs with some numbness, you were dismissed with 2 advil and take it easy for a few days - so mild/medium MS cases were likely unrecorded. It is only with the advent of the MRI that we are really seeing the true extent of this disease" I dont think youre accurate.
The intresting thing you did point out is how many people who are autopsied have lesions which might have gone undiagnosed....unfortuantely, lesions represent hundreds of diseases and symtoms which are NOT MS related...brain tumors, migrane headaches, any brain truama including a car accident or a blow to the head would also show lesions...
More interesting yet, is epidemiology. Since MS is hardly a newly discovered disease, there have been many studies of where the most people, from what backgrounds and nationalities as well as geographic location are found to have the highest concentration of the disease...and more recently the opposite is being considered- genetics and heredity. Statistically there is proven evidence that northern Europeans decent, as well as living in colder climates, shows higher concentration of MS found...but more recently, persons with a history of autoimmune diseases in their families as well as persons who have had viruses including Mono, CFS and similar other viruses are being linked to being prone to have the disease. Myself, I had no prior knowledge of any autoimmune diseases in my family, although my mother has been dx with Rheumatoid arthritis since my dx, 2 years ago....I have never had any viruses or childhood illnesses. I spent my summers as a lifeguard, and my life outside in the sun- so vitamin D defiency is hardly probable. I seem to go against everything "they" think links us to having MS...
More than likely its not the MRIs which are finding the disease more and more often, but the interest that the world has shown in the disease. Because of the publicity the disease has gotten, and the money which has been dedicated to research and the development of both drugs and cures- our newer generation of doctors are finding that autoimmune diseases have a fascination and opportunity which didnt exist 25 years ago. They are the ones who are pushing harder for answers, extending their practices into research and testing- getting invovled in the clinical trials and looking for answers. The MS societies and similar organizations are far and wide, and ever growing in their quest for donations and answers....its US, those of us who have the disease, who are going to be helping to find those answers and hopefully helping the next generation of both patients and doctors to find a cure..
Nikki
The intresting thing you did point out is how many people who are autopsied have lesions which might have gone undiagnosed....unfortuantely, lesions represent hundreds of diseases and symtoms which are NOT MS related...brain tumors, migrane headaches, any brain truama including a car accident or a blow to the head would also show lesions...
More interesting yet, is epidemiology. Since MS is hardly a newly discovered disease, there have been many studies of where the most people, from what backgrounds and nationalities as well as geographic location are found to have the highest concentration of the disease...and more recently the opposite is being considered- genetics and heredity. Statistically there is proven evidence that northern Europeans decent, as well as living in colder climates, shows higher concentration of MS found...but more recently, persons with a history of autoimmune diseases in their families as well as persons who have had viruses including Mono, CFS and similar other viruses are being linked to being prone to have the disease. Myself, I had no prior knowledge of any autoimmune diseases in my family, although my mother has been dx with Rheumatoid arthritis since my dx, 2 years ago....I have never had any viruses or childhood illnesses. I spent my summers as a lifeguard, and my life outside in the sun- so vitamin D defiency is hardly probable. I seem to go against everything "they" think links us to having MS...
More than likely its not the MRIs which are finding the disease more and more often, but the interest that the world has shown in the disease. Because of the publicity the disease has gotten, and the money which has been dedicated to research and the development of both drugs and cures- our newer generation of doctors are finding that autoimmune diseases have a fascination and opportunity which didnt exist 25 years ago. They are the ones who are pushing harder for answers, extending their practices into research and testing- getting invovled in the clinical trials and looking for answers. The MS societies and similar organizations are far and wide, and ever growing in their quest for donations and answers....its US, those of us who have the disease, who are going to be helping to find those answers and hopefully helping the next generation of both patients and doctors to find a cure..
Nikki
MSJayhawk
04-27-2008, 09:33 PM
The foundations of the MRI was discovered in 1946. In 1971 the first rudimentary medical use for the MRI was proposed. In 1973 the first machines were in experimental use.
In 1982, I was an early experiment with the MRI. The University had just built an MRI laboratory and scanned me for lesions. I believe that from 1982 onward advances have been obtained. With more knowledge, doctors could better ascertain a diagnosis. The most advanced knowledge has developed with the discovery of juvenile MS. In my own case, I believe my MS started showing itself when I was 15 with my foot drop.
I do not believe there is an epidemic as much as a more efficient system of diagnosing MS.
In Japan MS has only recently been discovered as a disease (not a long history). Like any discovery there is a learning curve. At last count there were 5000 patients, but this number will likely increase quickly before reaching a plateau. I believe that the number of average patients in the US will flatten out to an average.
In 1982, I was an early experiment with the MRI. The University had just built an MRI laboratory and scanned me for lesions. I believe that from 1982 onward advances have been obtained. With more knowledge, doctors could better ascertain a diagnosis. The most advanced knowledge has developed with the discovery of juvenile MS. In my own case, I believe my MS started showing itself when I was 15 with my foot drop.
I do not believe there is an epidemic as much as a more efficient system of diagnosing MS.
In Japan MS has only recently been discovered as a disease (not a long history). Like any discovery there is a learning curve. At last count there were 5000 patients, but this number will likely increase quickly before reaching a plateau. I believe that the number of average patients in the US will flatten out to an average.
sandy5673
05-05-2008, 11:00 AM
Either way the increases in diagnoses have me a little worried. I work at a small high school in Texas (about 35 teachers) and we have 3 confirmed cases of MS... one dx about 3 years ago... me dx last fall... and recently another teacher dx last month. I have only been there for 7 years but have had these problems for about 17 years. The other 2 are new to the district. Since I don't think the school had anything to do with developing MS, it does alarm me that we have so many in such a small population. This school is in a small rural town (population 900... inside the city limits... probably 2,000 total including those outside city limits). There are also 2 other MS cases that I am award of. This would be 5 persons out of a population of roughly 2,000... or one in every 400 persons.
I was one of those persons mis-diagnosed for years... I have had so many 'pinched nerves' and 'vertigo' that I finally quit going to the doctor until it got really bad and I couldn't walk. I don't know if this is the case for others but I know it was for me.
My thoughts is that there is an epidemic that started about 15-20 years ago and is just now being diagnosed. Thinking along that line, 15-20 years ago chemicals became more readily available in every use (cleaning, hair dyes, bug sprays, etc.) and the amounts of preservatives used in foods increased. I have been a firm believer of cleaning and sanitizing my house but now I am starting to question all of that! I even planted a garden that we will keep organic (for the first time... Sevin Dust used to be a gardening stable!) I know it is too late to turn things around for me, but maybe I can help my children????
I was one of those persons mis-diagnosed for years... I have had so many 'pinched nerves' and 'vertigo' that I finally quit going to the doctor until it got really bad and I couldn't walk. I don't know if this is the case for others but I know it was for me.
My thoughts is that there is an epidemic that started about 15-20 years ago and is just now being diagnosed. Thinking along that line, 15-20 years ago chemicals became more readily available in every use (cleaning, hair dyes, bug sprays, etc.) and the amounts of preservatives used in foods increased. I have been a firm believer of cleaning and sanitizing my house but now I am starting to question all of that! I even planted a garden that we will keep organic (for the first time... Sevin Dust used to be a gardening stable!) I know it is too late to turn things around for me, but maybe I can help my children????
Nenu
05-05-2008, 11:17 AM
I don't think any of us can figure out what got us here.
We can share our stories of our lives up to and dealing with MS, in hopes that we find common trends that we share that may hold the key to what causes the disease, but I believe if an answer is found in our lifetimes, it will come down to various contributing factors that result in MS developing.
We can share our stories of our lives up to and dealing with MS, in hopes that we find common trends that we share that may hold the key to what causes the disease, but I believe if an answer is found in our lifetimes, it will come down to various contributing factors that result in MS developing.
glamour girl
05-05-2008, 11:06 PM
Here in Australia.. i read 7 people are diagnosed a week... weird huh ?