Aa
How do you know what you know about MS?
There is a question on the expert forum that talks about using the internet, and it has me thinking about the world wide web and I would like your response to the following....
The POLL QUESTION:
"The majority of my knowledge about MS, its symptoms and its treatments, comes from:
AND THEN IN A RESPONSE, could you rate a percentage for each answer. Just give me a list of the letters A through F and the approximate percentage number. Your six numbers should total 100%.
Feel free to add any additional comments along with your percentage numbers.
Always wanting answers,
Lulu
The POLL QUESTION:
"The majority of my knowledge about MS, its symptoms and its treatments, comes from:
AND THEN IN A RESPONSE, could you rate a percentage for each answer. Just give me a list of the letters A through F and the approximate percentage number. Your six numbers should total 100%.
Feel free to add any additional comments along with your percentage numbers.
Always wanting answers,
Lulu
A) 20% I mostly learned about my meds and DMD from my neuro.
B) 10% my husband has been ultra supportive and shares a lot of Internet info about MS with me.
E) 70% this forum has been a Godsend to me. I learn new things all the time and the support is amazing!
Hugs,
Deb
B) 10% my husband has been ultra supportive and shares a lot of Internet info about MS with me.
E) 70% this forum has been a Godsend to me. I learn new things all the time and the support is amazing!
Hugs,
Deb
Thank you for explaining what I tried to say. Sometimes my words come out wrong.
Hugs,
Sumana
Hugs,
Sumana
I really am the wrong person to talk to about your being a personal trainer and knowing more than me. I have had my own troubles with PT's that think they know my body and can make it do what they want. Luckily I took the bull by the horns and told them I would set my own goals. They work for me not me for them.
Had they been learned in all forms of MS maybe. It is not what I found. Again, we all come from our own experiences to this board. I think it is wonderful that we give different views for posters to mull over and then hopefully decide for themselves which path to take.
I doubt any come to Medhelp agreeing with each post. Just look at some of the threads...lol....we all have different opinions. We are individuals searching. I am sure another trainer could be on this board and disagree with you on a post. It wouldn't be unheard of on any public board.
Had they been learned in all forms of MS maybe. It is not what I found. Again, we all come from our own experiences to this board. I think it is wonderful that we give different views for posters to mull over and then hopefully decide for themselves which path to take.
I doubt any come to Medhelp agreeing with each post. Just look at some of the threads...lol....we all have different opinions. We are individuals searching. I am sure another trainer could be on this board and disagree with you on a post. It wouldn't be unheard of on any public board.
Here is my vote:
10% for A, I think neuro can be knowledgeable when you find a good one and so I'm sure they can give a lot of good information if they are dedicated to there job.
0% for B, I think family and friends are a good support system to have but, can give very misleading information about the disease. I give them credit for trying but, they also should know the facts before making their opinions.
70% for C, I'm voting high on this because of medhelp only because the internet I believe is filled with false information. I don't believe in going to Google for answers. So the 80% is strictly for medhelp. I also use webmd is a good one.
10% for D, I think that the MS society is a great resource for information and facts.
10% for E, I think if you find a book that is factually and not based off of opinions and thoughts then yes I believe this is a good resource also to get information.
Take care..... Great poll Lu
Misty
10% for A, I think neuro can be knowledgeable when you find a good one and so I'm sure they can give a lot of good information if they are dedicated to there job.
0% for B, I think family and friends are a good support system to have but, can give very misleading information about the disease. I give them credit for trying but, they also should know the facts before making their opinions.
70% for C, I'm voting high on this because of medhelp only because the internet I believe is filled with false information. I don't believe in going to Google for answers. So the 80% is strictly for medhelp. I also use webmd is a good one.
10% for D, I think that the MS society is a great resource for information and facts.
10% for E, I think if you find a book that is factually and not based off of opinions and thoughts then yes I believe this is a good resource also to get information.
Take care..... Great poll Lu
Misty
I think my post is misunderstood. I come to this message board because people share what they do know about this disease and share their personal experiences. We all come passionate about how and when someone should push for a dx or when someone should look for another opinion or a third or forth. We even tell people when it is probably not MS. For sure if I had come it is the reaction I would have received with just a backache. We are all reacting from our own experience with the disease.
I am not picking at any particular nurse, PA, PT, Trainer, doctor, etc that posts here. However, even if we had a neuro on staff for our board I wouldn't take his or her word for anything. I do my own search. I talk to my own neuro. If comes the day I no longer feel she is doing the job, I will not hesitate to look elsewhere.
Just my opinion...not worth a dime.
I am not picking at any particular nurse, PA, PT, Trainer, doctor, etc that posts here. However, even if we had a neuro on staff for our board I wouldn't take his or her word for anything. I do my own search. I talk to my own neuro. If comes the day I no longer feel she is doing the job, I will not hesitate to look elsewhere.
Just my opinion...not worth a dime.
I did not understand Sumanadevii to be saying that "ordinary people with MS can't be knowledgeable about this disease". I understood her to be saying that ordinary people with MS (or medical professionals, or ppl who think they have MS) aren't AUTOMATICALLY more knowledgeable than anybody else.
You are both correct. Anyone who is knowledgeable is knowledgeable, and no training, diagnosis, or symptomatic experience makes you automatically more knowledgeable than the next guy. We learn what we learn from various sources. That's what makes this poll such a great poll.
Thanks, Lulu!
You are both correct. Anyone who is knowledgeable is knowledgeable, and no training, diagnosis, or symptomatic experience makes you automatically more knowledgeable than the next guy. We learn what we learn from various sources. That's what makes this poll such a great poll.
Thanks, Lulu!
I would have to disagree here.
If you learn something from a reputable source (ie: medical journals, class time for medical professionals, etc) then you are more learned than someone who hasn't.
Saying that someone with MS and a medical professional isn't more knowledgeable about MS than the rest of us is simply untrue.
I am a professional personal trainer. I would say I know more about exercise than you do. However, if you learn something about it, then you would be learned too, correct?
Knowledge is knowledge. How you get it doesn't matter. If it's true knowledge than you are more knowledgeable than someone who doesn't have tht knowledge - no matter what kind of degrees or illnesses they have.
Saying that ordinary people with MS can't be knowledgeable about this disease is setting up a hierarchy where the neuros are all knowing gods - which their not.
Learned knowledge, is not personal opinion, it's knowledge.
Just my thoughts,
Corina
If you learn something from a reputable source (ie: medical journals, class time for medical professionals, etc) then you are more learned than someone who hasn't.
Saying that someone with MS and a medical professional isn't more knowledgeable about MS than the rest of us is simply untrue.
I am a professional personal trainer. I would say I know more about exercise than you do. However, if you learn something about it, then you would be learned too, correct?
Knowledge is knowledge. How you get it doesn't matter. If it's true knowledge than you are more knowledgeable than someone who doesn't have tht knowledge - no matter what kind of degrees or illnesses they have.
Saying that ordinary people with MS can't be knowledgeable about this disease is setting up a hierarchy where the neuros are all knowing gods - which their not.
Learned knowledge, is not personal opinion, it's knowledge.
Just my thoughts,
Corina
I get mine straight from the National MS Society webpage and from my neuro. I do pick up a few things from websites and messageboards. That being said just because someone thinks they have MS and are medical professionals does not make them any more learned on the subject than others. Just because someone has MS and has been under treatment for years does not make them learned. It just gives their personal opinions and view.
Sumana
Sumana
The majority of my knowledge about MS, its symptoms and its treatments, comes from:
1% - My neurologist or other doctors and health care professionals. I have not seen an MS specialist yet. Though my neurologist is very kind and wants to be helpful, I think he just doesn't have that much knowledge to share. Also, my visits with him are brief compared to the amount of time I can spend researching at home.
0% My family, friends and other personal contacts. As helpful as they would like to be, my friends and family know almost nothing about MS. The info they have shared is usually either something I have already found out on my own, or misinformation gathered from mainstream media outlets.
40% My use of the internet, including support groups such as MedHelp. MedHelp is my main internet info resource, although I also learned a lot of the basics through websites for MS Centers and MS Specialists, as well as wikipedia and the NCBI (www.ncbi.nlm.nih.gov) multiple sclerosis page .
9% My association with organizations that aid MS patients, such as the MS Society and their support groups. I am newly diagnosed, and just signed up with the MS Society, so I haven't received info from them yet via mail. I did read their website, however, and learned some things there. I have an appointment at an MS Center in March, and I imagine I'll connect with a support group then where I'll get a ton of info.
50% Traditional research methods at the library or other book sources (I am including online access to medical journals here). As a grad student with access to medical journals online, the first thing I did when my neuro told me he was suspicious that I might have MS was read through all the medical journals I could get ahold of that discussed MS symptoms, MS diagnosis, MS progression, prognosis, and drug treatments.
0% other ways.
1% - My neurologist or other doctors and health care professionals. I have not seen an MS specialist yet. Though my neurologist is very kind and wants to be helpful, I think he just doesn't have that much knowledge to share. Also, my visits with him are brief compared to the amount of time I can spend researching at home.
0% My family, friends and other personal contacts. As helpful as they would like to be, my friends and family know almost nothing about MS. The info they have shared is usually either something I have already found out on my own, or misinformation gathered from mainstream media outlets.
40% My use of the internet, including support groups such as MedHelp. MedHelp is my main internet info resource, although I also learned a lot of the basics through websites for MS Centers and MS Specialists, as well as wikipedia and the NCBI (www.ncbi.nlm.nih.gov) multiple sclerosis page .
9% My association with organizations that aid MS patients, such as the MS Society and their support groups. I am newly diagnosed, and just signed up with the MS Society, so I haven't received info from them yet via mail. I did read their website, however, and learned some things there. I have an appointment at an MS Center in March, and I imagine I'll connect with a support group then where I'll get a ton of info.
50% Traditional research methods at the library or other book sources (I am including online access to medical journals here). As a grad student with access to medical journals online, the first thing I did when my neuro told me he was suspicious that I might have MS was read through all the medical journals I could get ahold of that discussed MS symptoms, MS diagnosis, MS progression, prognosis, and drug treatments.
0% other ways.
I haven't pulled up this poll in a while (since April) and would like to add the responses of our new people to this grouping. Would you mind taking some time to add your thoughts to this if you haven't already done so?
Thanks,
Lulu
Thanks,
Lulu
A. 10% Neurologist
B. 80% Internet and Forums like MedHelp
C. 1% Family - as this is new to all of us.
D. 9% Books particularly MS for Dummies
E. 0% MS organizations/society - I am unable to find one yet in my country
F. 0% Other ways.
~Mills~
B. 80% Internet and Forums like MedHelp
C. 1% Family - as this is new to all of us.
D. 9% Books particularly MS for Dummies
E. 0% MS organizations/society - I am unable to find one yet in my country
F. 0% Other ways.
~Mills~
C. 50%. The Internet has a world of information! I am still learning here.
D. 25%. I hit up the MS Society way back when. They send me gobs of great info.
E. 25%. I love the library! I read many books on MS way back when, too. I didn't have the Internet.
Addi
RazCarver actually did the math and here is the reply I got by PM---
A 23%
B 2%
C 54%
D 10%
E 7%
F 5%
think I did it right. add all numbers per letter, per person.
take total per letter and / by 19 (the number of people that posted percents).
if not I tried and it was a challenge for today LOL.
Thanks for the fun
Raz
A 23%
B 2%
C 54%
D 10%
E 7%
F 5%
think I did it right. add all numbers per letter, per person.
take total per letter and / by 19 (the number of people that posted percents).
if not I tried and it was a challenge for today LOL.
Thanks for the fun
Raz
I really am going to chart these numbers this time.......... unless someone else out there wants to volunteer!
1% A. neurologist says "that's normal for people with MS"- so often
0% B.
98% C. mostly here and the great health pages that have been done. links from here like
the teleconferences and others. MS Society website. MSMoms and a few blogs.
0% D. haven't tried again to call the MS Society office here until I am out of limbo.
don't like being fussed at for nothing.
1% E. some book sources
0% F.
0% B.
98% C. mostly here and the great health pages that have been done. links from here like
the teleconferences and others. MS Society website. MSMoms and a few blogs.
0% D. haven't tried again to call the MS Society office here until I am out of limbo.
don't like being fussed at for nothing.
1% E. some book sources
0% F.
16% (4) A. My neurologist or other doctors and health care professionals.
50% (19) C. My use of the internet, including support groups such as MedHelp.
34% (0) F. other ways.
50% (19) C. My use of the internet, including support groups such as MedHelp.
34% (0) F. other ways.
hi ok
A-65% -after i found a good dr!! he is the best!
B-O%
C-35%
D-O%-NONE
E-O% cant remember going to a library- ever- lol
F-O%
I still have questions- i use to drive my mom nuts with why???
A-65% -after i found a good dr!! he is the best!
B-O%
C-35%
D-O%-NONE
E-O% cant remember going to a library- ever- lol
F-O%
I still have questions- i use to drive my mom nuts with why???
if you entered the poll when this was originally posted, it won't let you "vote" again, but you can still add additional comments. Feel free to update your response if your fact gathering methods have changed.
And yes, JSSL, despite rumors, the book is not dead. It's just limping along, though. LOL
best, L
And yes, JSSL, despite rumors, the book is not dead. It's just limping along, though. LOL
best, L
A 2% - I have suspected MS on my own for years; not much he could tell me at Dx that I had not already figured out on my own.
B 0% - Not a single person I know has any good education on this subject
C 98% - It's all about the "net"
D 0% - I'm not associated with any organizations at this time, although I did participate in the 3 mile MS walk on Saturday :)
E 0% - Are there still libraries out there?
F 0% - No other I can think of?
B 0% - Not a single person I know has any good education on this subject
C 98% - It's all about the "net"
D 0% - I'm not associated with any organizations at this time, although I did participate in the 3 mile MS walk on Saturday :)
E 0% - Are there still libraries out there?
F 0% - No other I can think of?
(A) 5% - all they have really done is confuse me
(B) 0% - my family bascially s u c k
(C)90% - yeah
(D)5% - the MS people are handy sometimes, though also confuse me and my MS nurse never follows through with things
(E)0% - books are online
(F) 0%
(B) 0% - my family bascially s u c k
(C)90% - yeah
(D)5% - the MS people are handy sometimes, though also confuse me and my MS nurse never follows through with things
(E)0% - books are online
(F) 0%
dusting this one off for jensequitir's post about using the internet - feel free to add your thoughts to this poll.
Great poll. I can't wait to see the pie chart after everyone chimes in.
A. 40%
B 10%
C. 45%
D. 5%
I am learning more all of the time but I think that I learn more from friends etc and their experiences so I had to make C the highest even though I have learned a ton from the docs. I just joined the MS society so I haven't given them much time and I use the internet more then books because I can surf faster than plowing through hundreds of pages of medical terms.
Erin :)
A. 40%
B 10%
C. 45%
D. 5%
I am learning more all of the time but I think that I learn more from friends etc and their experiences so I had to make C the highest even though I have learned a ton from the docs. I just joined the MS society so I haven't given them much time and I use the internet more then books because I can surf faster than plowing through hundreds of pages of medical terms.
Erin :)
I know that I am going off topic here but I just wanted to say that your comments about Judy were beautiful.
What a wonderful way to be remembered. If only we could all touch someone in that way.
Mand
What a wonderful way to be remembered. If only we could all touch someone in that way.
Mand
You are So Cool and Smart too. My math skills are shot, but I'll do my best, just for you and our group
A- 1% I had the Worse Doctors at the begining of this journey, Their replies to most question, were "I don't know", or "we'll have to wait to see where this goes". Yes, I am very Serious. The best one was "well you are just causing it by giving up". Except for Dr. Hessler, they made me feel crazy
B- 1% my Sister Laura tried to help me, but she got mad when I wouldn't let her treat me with her herbs and needles
C- 0% Didn't have a computer until 1999
D-98% When I studied to become a peer counselor for The MS Society, The woman who led our training group was bed ridden, Used a respirator, needed round the clock care givers with her. know I drove her crazy with all my question and the time it took me to write down every single word she said. Her name was Judy,she was the most thoughtful, caring, loving, Beautiful person I was ever Blessed to meet. The first few minutes in her presents I was scared that this was going to be my future, but she reassured each of us, that wasn't the case and even if it was "So What" Life wasn't going to be over, just different. She traveled around the country " giving encouragement and hope" to anyone who needed it. She like to say "I am the only Lady in the world who works from her bed 24 hours a day" She was being quite literal. I lost track of this remarkable woman who made a profound difference in my life. I was a peer counselor for almost four years. I received far more then I ever gave.
F-0%
I didn't fudge on these %'s just so I could do the math. Judy remains in my Heart and Prayers, after all these years( 1986-1990) ( My years with her as my Life's Teacher. I feel like she is chasing butterflies, and catching Sun Beams where ever she is. I hope she is free from her life of PAIN and I hope she knows that she touch every heart of every person she meant on her "Life's Journey"
Laura thanks for giving me a chance to share " Judy " with our group.
A- 1% I had the Worse Doctors at the begining of this journey, Their replies to most question, were "I don't know", or "we'll have to wait to see where this goes". Yes, I am very Serious. The best one was "well you are just causing it by giving up". Except for Dr. Hessler, they made me feel crazy
B- 1% my Sister Laura tried to help me, but she got mad when I wouldn't let her treat me with her herbs and needles
C- 0% Didn't have a computer until 1999
D-98% When I studied to become a peer counselor for The MS Society, The woman who led our training group was bed ridden, Used a respirator, needed round the clock care givers with her. know I drove her crazy with all my question and the time it took me to write down every single word she said. Her name was Judy,she was the most thoughtful, caring, loving, Beautiful person I was ever Blessed to meet. The first few minutes in her presents I was scared that this was going to be my future, but she reassured each of us, that wasn't the case and even if it was "So What" Life wasn't going to be over, just different. She traveled around the country " giving encouragement and hope" to anyone who needed it. She like to say "I am the only Lady in the world who works from her bed 24 hours a day" She was being quite literal. I lost track of this remarkable woman who made a profound difference in my life. I was a peer counselor for almost four years. I received far more then I ever gave.
F-0%
I didn't fudge on these %'s just so I could do the math. Judy remains in my Heart and Prayers, after all these years( 1986-1990) ( My years with her as my Life's Teacher. I feel like she is chasing butterflies, and catching Sun Beams where ever she is. I hope she is free from her life of PAIN and I hope she knows that she touch every heart of every person she meant on her "Life's Journey"
Laura thanks for giving me a chance to share " Judy " with our group.
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