Aa
I'am really upset
I know this forum isn't a diagnosis forum and you all make that very clear so maybe instead of saying sorry really don't know you could refer them to the website of limbolanders. I'am so upset about the responses that miss_dx got she is surely in pain and reaching out, sometimes our questions aren't about the answers we will get but just to know somebody is there and will answer our call of I'm alone and nobody else understands so let me please throw this by you.We all know Limboland is hell so let's be a little more sensitive or please let us know where we can go to get the support so we don't take up your time. You have all been there, so can we all be a little more sensitive to those that haven't been there yet.
I am still a newbie, but the support and information I have been given has been nothing but amazing...
I think emotions can run high with a forum such as this dealing with a debilitating disease...
I just hope people don't feel they have to leave because they felt like they couldn't connect...There was times I felt this way....But not now...The people here are very smart and are very compassionate...
mb
I think emotions can run high with a forum such as this dealing with a debilitating disease...
I just hope people don't feel they have to leave because they felt like they couldn't connect...There was times I felt this way....But not now...The people here are very smart and are very compassionate...
mb
Wow, I am really late coming into this but if I may...
It is really hard to know who we are talking to sometimes. There are many of us here who have been around for a while that "know" people here but some of the newbies are really hard to read.
I think it's important to always remind people that we are not experts and we are giving our opinions based on our mostly uneducated opinions. There are very few of us here who actually have a medical background and even if we all were competent medical people, giving our medical opinions on the internet can be dangerous.
That being said, there are also people here who frame their answers well and give newbies a well thought out response. For some it's a relief, for others, it's not what they want to hear. Oh well. It's one of the chances we take when we respond to someone on this forum.
Many of us can tell a tale of a misdx with ourselves and/or a loved one. Some have even lost family/friends to a misdx. Dr's are human, they make mistakes, the mistakes however sometimes are life altering. This makes us suspicious of the medical community, and rightly so but at some point we will need to rely on their expertise again.
Asking questions isn't bad, seeking second opinions isn't bad. At some point however you have to ask yourself if you have confidence in your dr and the dx, and then MOVE ON. Just b/c you or someone you love has been misdx before doesn't mean that every medical opinion is wrong.
Take the lesson from it and be your own best advocate but don't let it effect every decision you make.
I didn't see any comment to miss_dx that was out of line. And, in my opinion, would have been extremely difficult to respond w/o touching on a sensitive topic.
One of the things I love about this forum is we are all different. Love, love, love it.
Julie
It is really hard to know who we are talking to sometimes. There are many of us here who have been around for a while that "know" people here but some of the newbies are really hard to read.
I think it's important to always remind people that we are not experts and we are giving our opinions based on our mostly uneducated opinions. There are very few of us here who actually have a medical background and even if we all were competent medical people, giving our medical opinions on the internet can be dangerous.
That being said, there are also people here who frame their answers well and give newbies a well thought out response. For some it's a relief, for others, it's not what they want to hear. Oh well. It's one of the chances we take when we respond to someone on this forum.
Many of us can tell a tale of a misdx with ourselves and/or a loved one. Some have even lost family/friends to a misdx. Dr's are human, they make mistakes, the mistakes however sometimes are life altering. This makes us suspicious of the medical community, and rightly so but at some point we will need to rely on their expertise again.
Asking questions isn't bad, seeking second opinions isn't bad. At some point however you have to ask yourself if you have confidence in your dr and the dx, and then MOVE ON. Just b/c you or someone you love has been misdx before doesn't mean that every medical opinion is wrong.
Take the lesson from it and be your own best advocate but don't let it effect every decision you make.
I didn't see any comment to miss_dx that was out of line. And, in my opinion, would have been extremely difficult to respond w/o touching on a sensitive topic.
One of the things I love about this forum is we are all different. Love, love, love it.
Julie
I think the statement that one shouldn't second guess the experts as it never ends well, kinda was what set her off.
Second guessing is common practice in the medical community, that's why we get second opinions because ultimately it is just an opinion.
I don't think the post was meant that way but I'd never advise anyone to not second guess an opinion. Not when our health is at stake.
Second guessing is common practice in the medical community, that's why we get second opinions because ultimately it is just an opinion.
I don't think the post was meant that way but I'd never advise anyone to not second guess an opinion. Not when our health is at stake.
I would hope that all of this has grown out of a bad day, or something else happening behind the scenes that has little or nothing to do with this community and our response or lack thereof.
Jen is spot on - we all are here connected with this crazy disease and we are just ordinary people working our way through this world, day by day. Everyone comes here out of a committment to find/give support for the processes we go through all the time.
Bob's comment about the weekend is also true, but I know we try our best to make sure everyone's post at least gets acknowledged, even if it is just an "I don't know" answer.
Repeatedly we talk about leaving the reading of MRIs to the experts - there is a reason for that, actually there are a bunch of reasons for that and Bob as well as many others has articulted them well over many of his posts about the difficulties of our pc's being able to interpret the images, among other reasons.
Personally, I have to comment on the problem of posts. not being answered. I spent almost two hours on Sunday night reading all the posts on the first page that had not received a response and made sure that all of those people knew that someone had read their words even if I couldn't give them an answer. The warning about slow weekends is even in our welcome post.
It takes a lot of time to read and then respond appropriately to the various posts listed here and everyone in this community does an excellent job of giving well thought out responses.
We are a bright spot in a very bleak journey for so many people. I know we will remain to be that for almost all the people who serendipitously find us here.
peace, Lulu
Jen is spot on - we all are here connected with this crazy disease and we are just ordinary people working our way through this world, day by day. Everyone comes here out of a committment to find/give support for the processes we go through all the time.
Bob's comment about the weekend is also true, but I know we try our best to make sure everyone's post at least gets acknowledged, even if it is just an "I don't know" answer.
Repeatedly we talk about leaving the reading of MRIs to the experts - there is a reason for that, actually there are a bunch of reasons for that and Bob as well as many others has articulted them well over many of his posts about the difficulties of our pc's being able to interpret the images, among other reasons.
Personally, I have to comment on the problem of posts. not being answered. I spent almost two hours on Sunday night reading all the posts on the first page that had not received a response and made sure that all of those people knew that someone had read their words even if I couldn't give them an answer. The warning about slow weekends is even in our welcome post.
It takes a lot of time to read and then respond appropriately to the various posts listed here and everyone in this community does an excellent job of giving well thought out responses.
We are a bright spot in a very bleak journey for so many people. I know we will remain to be that for almost all the people who serendipitously find us here.
peace, Lulu
I am going to write this rather carefully because I don't think anyone meant anything by what they said. Clearly, there was more history to Miss_dx post. That said, I can see her point.
I've seen a lot of posts advising newbies to not read their own MRI's, it being better left to trained doctor's as they have years and years of experience and training.
The problem is a lot of us (limbolanders) are being dismissed because our MRI's are negative and yet we are experiencing very real symptoms. It feels like further dismissal.
In the same breath, statistics are given over spinal taps being a false negative (for MS) and the test itself not being a clinical definite test one way or the other.
The strange thing is: I have yet to find statistics on how many MRI's that were read incorrrectly yet I know of many here who had to go to several years worth of Neuro's to only find out there were lesions missed.
I don't know, I understand opinions. I understand that some shouldn't read their own MRI's as if they are professionals but I also think that maybe if we were more educated then we just might be able to get the answers we need sooner.
Mostly, those of us in limboland are seeking validation so to ask us to not read our own MRI's and be dismissed again, is disheartening to some.
Hopefully that makes sense.
~Barb (who is now going to go back to hiding place. ;)
I've seen a lot of posts advising newbies to not read their own MRI's, it being better left to trained doctor's as they have years and years of experience and training.
The problem is a lot of us (limbolanders) are being dismissed because our MRI's are negative and yet we are experiencing very real symptoms. It feels like further dismissal.
In the same breath, statistics are given over spinal taps being a false negative (for MS) and the test itself not being a clinical definite test one way or the other.
The strange thing is: I have yet to find statistics on how many MRI's that were read incorrrectly yet I know of many here who had to go to several years worth of Neuro's to only find out there were lesions missed.
I don't know, I understand opinions. I understand that some shouldn't read their own MRI's as if they are professionals but I also think that maybe if we were more educated then we just might be able to get the answers we need sooner.
Mostly, those of us in limboland are seeking validation so to ask us to not read our own MRI's and be dismissed again, is disheartening to some.
Hopefully that makes sense.
~Barb (who is now going to go back to hiding place. ;)
There are a lot of questions and comments on here that people are not comfortable answering. That is even more true on weekends when people take a break from MedLine. So be it. It is a free forum and you get what you pay for. Many of the people here will say that they get better support here than from the hundred (or more) in payments that they have dropped at the Neurologist.
Face it, many of the people who come to the forum are here because they didn't get the response they expected from their Neurologist. Some people want "a different answer." They may or may not get it here. I have been flamed by a few folks for stating: "Your symmetric symptoms really don't sound like MS."
Some folks are going to respond in a negative way at times. I have just gotten used to it at this point. Forget about it if one of us agrees with someones Neurologist.
Bob
Face it, many of the people who come to the forum are here because they didn't get the response they expected from their Neurologist. Some people want "a different answer." They may or may not get it here. I have been flamed by a few folks for stating: "Your symmetric symptoms really don't sound like MS."
Some folks are going to respond in a negative way at times. I have just gotten used to it at this point. Forget about it if one of us agrees with someones Neurologist.
Bob
WOW. Just WOW. What the heck? We're just people. Just like you. We always try to be compassionate to everybody. We're all adults here. If you're looking for a specific response that you're not getting, perhaps you're not asking the right questions.
Gosh I will have to say also that the time it took me to respond to the last post I now have read your last so I now hold up the white flag and will remove myself quietly. Hugs to go as well.
We are not Doctors you are right so maybe we can respond even when we don't know like another uneducated but caring individual. Or better yet, yes we don't respond at all, you don't always have to have all the answers but at least when you do be compassionate TO ALL not your select few that have made it past your she or he is in test. The forum is factual based on your own experience or web sites that you forward others to so please you are a group of people that are going through or have been through -ell trying to find out what is going on, you are a forum of individuals that are there for one another and others in the future sharing what you have and are going through to help others because you care don't let it become just another thing you have to do.My gosh, my critique, if that's how you take it then I have to say,it is freely given to one and all but only if it applies. My best to all of you.
COMMUNITY LEADER
Lord, in the time it took me to write my response, it seems more misinterpretations are happening. With the intent of calming everything down lets take a few deep breaths, please!!
I probably should point out that this forum totally supports limbo landers, I am a community leader and i am not officially dx with MS, and therefore I am a limbo lander, far too many years in limbo to think about (lol) so please dont think if you dont have a dx of MS we dont understand or you or anyone else is not worth our time, that is so unfair!
HUGS...............JJ
I probably should point out that this forum totally supports limbo landers, I am a community leader and i am not officially dx with MS, and therefore I am a limbo lander, far too many years in limbo to think about (lol) so please dont think if you dont have a dx of MS we dont understand or you or anyone else is not worth our time, that is so unfair!
HUGS...............JJ
COMMUNITY LEADER
I too am sorry you feel this way, truth be told i didn't respond because i had nothing of interest to offer her. My understanding as per her first post was that she was looking for comparrisons and was also asking for people to look at her MRI pics, not that she was looking for support as such (though theoretically we all need that anyway) but it didn't seem appropriate for me to offer unsolisited support when it looked to be fact orientated and i had no facts to offer.
I was actually shocked by the 'tone' of her second response, it was sad and tragic and unfair for anyone to have those experiences but no one that responded, had been mean or anything along those lines towards her, none! The only negative if you could class it as negative was no one responded with what she was looking for, the replies where honest opinions based from what was disclosed in the original post.
The second post was emotional and heartfelt but still i do not understand how anything that members said could of warrented such a response, the only negative given was from the poster as far as I can see and i'm sure its mainly coming from yrs of medical bungling and not from the way our members behaved. There was absolutely no way to know this poster was in so much pain until the second post, my instinct is to offer support because its now blatantly obvious but still i am reluctant because of the sting she delt the others.
This forum is factual and supportive with out fault, or critism of others which is not something you commonly find in forum communities and I hope you and anyone else that reads your critique will start to see that that is freely given to one and all, not because we have to but because we care!
I was actually shocked by the 'tone' of her second response, it was sad and tragic and unfair for anyone to have those experiences but no one that responded, had been mean or anything along those lines towards her, none! The only negative if you could class it as negative was no one responded with what she was looking for, the replies where honest opinions based from what was disclosed in the original post.
The second post was emotional and heartfelt but still i do not understand how anything that members said could of warrented such a response, the only negative given was from the poster as far as I can see and i'm sure its mainly coming from yrs of medical bungling and not from the way our members behaved. There was absolutely no way to know this poster was in so much pain until the second post, my instinct is to offer support because its now blatantly obvious but still i am reluctant because of the sting she delt the others.
This forum is factual and supportive with out fault, or critism of others which is not something you commonly find in forum communities and I hope you and anyone else that reads your critique will start to see that that is freely given to one and all, not because we have to but because we care!
I am sorry you misinterpreted what I said. I was NOT showing you the door, I didn't realize that when you mentioned in your post why don't we give them the limbo landers website ,that you were being factitious.
What about the answers to Miss_dx, specifically, did you find wrong? I would like to know so that we can learn and not make the same mistake again.
Ren
What about the answers to Miss_dx, specifically, did you find wrong? I would like to know so that we can learn and not make the same mistake again.
Ren
I went back and re read her post and the responses and I don't think that any one was rude in anything they said to her... Yes she was reaching out but in her first original post she didn't mention the things that was mentioned in her last post...
I think she really became upset because she was misunderstood... The only thing during re reading all of it that upset me was when she said we where the ones that where lucky... LUCKY really? I don't think MS is very lucky at all...
I know being in limbo land is the scariest place in the world... I thought that too until I was diagnosed with MS... Now I know where the scariest place in the world is... Being confined to a wheelchair, in constant pain, trembling all the time, and I could go on but everyone gets my drift...
I'm 46 years old and can't go outside to play with my kids or grand kids...Heck I don't even know if I'm gonna wake up or not.. That is if I actually go to sleep... Yes limbo land is hell but I guarantee you MS isn't no walk in the park so to speak...
I really hope that ms_diagnosed reads this because we do understand and have sympathy for you and I feel like nobody was ever rude at any time... My dad was sick for 5 years before they found his cancer and he was accused of all the same things that your husband was... My mom believed him and kept on going through all of it...
By the time we found out it was cancer it was spread all over his body and there was nothing else that could be done... Trust me when I say I know how you felt... You can't blame others though... GOD is the one in control not us...
Sorry all, for some reason I just needed to say all this... I do love you all and I pray that I'm always supportive to each and every one of you... I don't know what I would do without you...
I'll be praying,
Carol
I think she really became upset because she was misunderstood... The only thing during re reading all of it that upset me was when she said we where the ones that where lucky... LUCKY really? I don't think MS is very lucky at all...
I know being in limbo land is the scariest place in the world... I thought that too until I was diagnosed with MS... Now I know where the scariest place in the world is... Being confined to a wheelchair, in constant pain, trembling all the time, and I could go on but everyone gets my drift...
I'm 46 years old and can't go outside to play with my kids or grand kids...Heck I don't even know if I'm gonna wake up or not.. That is if I actually go to sleep... Yes limbo land is hell but I guarantee you MS isn't no walk in the park so to speak...
I really hope that ms_diagnosed reads this because we do understand and have sympathy for you and I feel like nobody was ever rude at any time... My dad was sick for 5 years before they found his cancer and he was accused of all the same things that your husband was... My mom believed him and kept on going through all of it...
By the time we found out it was cancer it was spread all over his body and there was nothing else that could be done... Trust me when I say I know how you felt... You can't blame others though... GOD is the one in control not us...
Sorry all, for some reason I just needed to say all this... I do love you all and I pray that I'm always supportive to each and every one of you... I don't know what I would do without you...
I'll be praying,
Carol
Thanks so much I'am fully aware of the Limbolander site. Sorry to take up your time defending yourself and your forum because that is not what I was about. I know when somebody is showing me the door so I will say thank you and wish everyone and I truly mean this with all my heart Peace,No Pain, and Happiness.
Carol, I've been doing this for almost 30 years and until recently haven't lost my mind but am now back in the diagnosis mode. I have tried to ignore and have gone to docs to only be fluffed off and because I'am passive aggressive I'am just now being the aggressive part am now going through the diagnosis hell we all have been through but lucky me I get to do it again and can only hope it doesn't take forever. I thought when I was younger ignorance was bliss but now know that is so not true and am very sensitive to others frustrations. That being said I know everyone else is but it is so important to hear the true message and not get caught up in the usual because we all know MS is MiSrable. It can't always be blah blah blah blah,blah
Hello,
I agree that many people who post are just reaching out to find someone that understands the terrible angst and frustration being in limboland can produce. We try our best to give support and I am sorry that you did not agree with the answers that Miss_dx received.
I don't think she received any callous or rude answers and those that answered were just giving their opinions. No one here is a physician so we can't possibly have all the answers or have heard of all neuro conditions.
If you are uncomfortable here, I looked up the Neuro Limbolanders site as you requested.
It is :
http://www.medhelp.org/forums/SURVIVING-NEUROLOGICAL-LIMBO-LAND---NO-DX/show/553
We are not suggesting that you or Miss_dx leave this forum and go to that forum, it is just an available option.
As for your comment about being sensitive to others posts, I believe for the most part that our responses here on the forum are sensitive to others feelings and needs. I am sorry you feel differently. We welcome opinions that help to improve our forum and a reminder to be sensitive is a point we all need to remember.
Ren
I agree that many people who post are just reaching out to find someone that understands the terrible angst and frustration being in limboland can produce. We try our best to give support and I am sorry that you did not agree with the answers that Miss_dx received.
I don't think she received any callous or rude answers and those that answered were just giving their opinions. No one here is a physician so we can't possibly have all the answers or have heard of all neuro conditions.
If you are uncomfortable here, I looked up the Neuro Limbolanders site as you requested.
It is :
http://www.medhelp.org/forums/SURVIVING-NEUROLOGICAL-LIMBO-LAND---NO-DX/show/553
We are not suggesting that you or Miss_dx leave this forum and go to that forum, it is just an available option.
As for your comment about being sensitive to others posts, I believe for the most part that our responses here on the forum are sensitive to others feelings and needs. I am sorry you feel differently. We welcome opinions that help to improve our forum and a reminder to be sensitive is a point we all need to remember.
Ren
You have been nothing but supportive Carol I was talking about the response ms_dx got and felt so bad for her.
I'm not real sure what has got you so upset but I'm very sorry your feelings have been hurt... I was in limbo land for many years and trust me I haven't forgotten... Also during that time I received nothing but support from the many wonderful people of this forum... I do apologize if I have said something that has upset you...
I'll be praying,
Carol
I'll be praying,
Carol
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