Musings on Trust and Skepticism

[Quixotic1]

I've been wanting to write this for a long time, and tonight it seemed appropriate.  Sometime back a forum poster challenged us to examine whether we on the forum encourage too many people to disregard their doctors' opinions and not accept the doctors' diagnoses.  The person raised a valid point, and I have thought about it a lot.  Something that goes hand in hand with this question is the "belief" or acceptance of what people here tell us about themselves.  This is how I feel about the subject.

Here, on an online forum, we see only a tiny snapshot of a person and their questions and problems.  In my mind I have chosen to believe what they say.  Often people sound really "out there" or really anxious, or like they have studied MS and are presenting the data so that only MS seems a possible answer.  I think all of these things happen, but I still chose to take what they say at absolute face value and treat it as the truth.  We are all human and we all "color" what we write with what we have learned, what we fear, and sometimes what we want to hear.

A huge topic with anyone stuck with undiagnosed symptoms is the internal fear or the accusation by family, friends and doctors that they are just anxious or depressed or "stressed."  People arrive here already doubting themselves.  We do not need to add to this doubt at all.  Beside, a huge number of us have been through exactly the same thing.  Are some people anxious?  Heck, Yeah!!  Who could avoid it?  Does that anxiety cause them to create or magnify symptoms?  Probably - if they are human.

I have found very clearly in the last 8 months or so, that people with actual "anxiety disorders" know when this is a factor in their story.  They readily admit it and, for the most part have already gone through a great deal of self-analysis and self-doubt with regard to it.  Most will say, "This doesn't feel like my usual 'freaking out' over symptoms.  I believe them.  Sometimes I do get an glimpse that a person is self-analyzing down to tiny, tiny little things  (one woman several months ago reported that "one eyelid was drooping ever so slightly more than the other."  If you have to look that closely, it isn't a problem)  and creating a bigger problem than they might otherwise have.  In those cases I try gently to mention this and discuss ways to sort it all out.  But, I still believe them.

The second half of the equation is the out-and-out dismissal of symptoms because of stress, anxiety or depression.  We hear this from a new person almost everyday.  So often the doctors doing this have not even attempted to evaluate the patient's problems.  Should this off-hand, arrogant or lazy dismissal that we are suffering be taken to heart?  I say absolutely "NO."  Deep within us we have a knowledge when things are more severe than just stress and worry.  When that true knowledge clashes with a rejection of the validity of our symptoms we have the full right to reject it - whether or not the person has a medical degree.

And, as a forum, when we hear someone say something that goes against all medical reason we also have a duty to point that out to people and encourage them to seek better and more attentive medical care.  And we do that with great opinion and lust for the weinie roast ahead.

But, I have also noticed that we are supportive when a person finds a physician who is taking them seriously and trying hard to get to the answers.  We know that the answers are often elusive and a long time in coming.  We don't like it, but we do know it.

No one should ever feel here (and they don't) that they are being met with skepticism.  Their story is THEIR STORY and it is for us to accept, maybe correcting little things for the person's knowledge.  And NO ONE here should ever feel they must accept substandard, arrogant, dismissive or defective medical care.  That is a notion that a lot of people never consider. They were taught that you have a doctor and you stick with them no matter how they treat you (NOT!).

I brought this up because I know that the accusation that we don't believe anyone's doctor was upsetting to many people.  I think we have walked a good solid line in the dance between belief and rejection.  I'm proud of the tone and attitude that we have established and I wanted to say this.  Maybe it didn't need to be said, but I've wanted to write it for at least a month now.  Please know it is ONLY in response to the accusations of "Not believing anyone" and not to anything else that has occurred here on the forum.

I think you are all wonderful!  Happy New Year!

Quix

[Super_sally888]

This is a wonderful post.  Thanks.  It should go in with the files that are there for all newcomers to read and oldies to revisit.

This site is a little haven.  I don't think it at all encourages people to dwell on the emotional side of things, but rather is very practical and encouraging, not downplaying or over dramatizing.

Cheers

[Quixotic1]

I thought this thread could use a revisit also.  Quix

[Want to feel well!!!]

Hi Quix…

Merry Christmas…Happy New Year…and God Bless Us Everyone…seriously…

Your posting here was, as usual, very appropriate, point blank, and reassuring.  Thank you.  You are a blessing to us all here and definitely one of my 2007 angels.

I have been lying low for quite some time, but looking in on the forum occasionally.  I had landed at a point of limbo and ignoring everything seemed to work through the holidays, because I knew I had until the ball dropped in Times Square…my own personal goal to be “better” before I had to pay my annual deductible again.

I have a few questions for you concerning a medication I am now on and if my next plan of action seems sensible to you…just in your opinion…I do not want to push anything to taxing on to you…just a general opinion.

Wanna

[Wobbly]

I understand what Heartshome means, I am not yet Dx with what is wrong with me and all the specialisit I've seen think it's in my head...and I'm starting to think it is?  I get so many new symptoms...and they come and go, so I don't know if they are real or not??

I am now going for a physicatrict assessment, which I have no problem with, if that is the problem...I just want to know what it is so I can get some help to help with the symptoms.  Sorry, I'm just very confused today, but wanted to add something here.

My GP says I have to many med blood tests results that show something is wrong, but he doesn't know what?  I'm just happy I can come here and read or post something to friends I have met here.  Thanks so much

Andrea

[SOONERMOM]

Have you ever considered writing some kind of "manual" for people with MS.  Maybe call it :  MS--The road to diagnosis and beyond!

You really have the perfect viewpoint from which to write;  knowledge and compassion combined with the actual personal experience that VERY few doctors would have.  Your answers always have a comforting yet informative message.  I love that!

It sounds like those of you who are diagnosed traveled a very long and sometimes lonely journey.  I have only been at this for 3 months now and feel like my life has come to a grinding halt while everyone around me just continues on....

I guess I ask for a somewhat selfish reason.  I would definitely buy a book that would help guide me through this sometimes overwhelming and lonely time!    

Anyway, just a thought--NO PRESSURE or anything!

Stacey



  

[gooddays]

When I first came to this forum. Quix was the first one to welcome me.  Thank you for accepting ime n this great place.  As I have said I have been dealing with MS for the past 14 years and I has been the war of the titans.  I have been dxd from epilepsy to high blod presure, to strees, to emotially problems, you name it, according to my doctor, I had it. So I know  Quix, what you are saying about doubting doctors.

It is not that we are trying to know more that those who went medical school, you also went to Med school, but we are the ones that know our body better that any one else, and the ones that know when the doctor says that nothing is wrong with us.  We would like to believe in what they say, but our body is giving us signals thatshould be looked upon a little deeper to come to a better conclusion in medical terms and treatment.  I am not saying that everyone who has a twicth in one eye or one of his/her legs is numb for while has MS, but if this symptoms get worst or never go away, you should talk your doctor about it  and request to have more specialized tests in order to rule out any chronic disease.

You are right Quix, in this forum we all try to encourage people and try to lift people's spirit in order to help each other deal with what they are going through because we have been there too,  We are people that from the onset of our ordeal, have done a lot of research and have been to more that one physician, who has come back with answers and treatments for what it is called MS:  there are even some, who have not been dxd yet, but have started in the ABCs treatment just in case they have it hidden, because treatment in the early stages is better that later into the disease because that seem to reduce the number of relapses.

Once again, thank for your post, it should help a lot of people, the way it has helped us. I hope that this new Year brings us all better understanding of this monster, a lot of HEALTH, great friends in this forum, but MOST OF ALL, MAYBE THE CURE FOR MS.

QUIX YOU ARE GREAT, KEEP IT UP!!!!!!!

HAPPY NEW YEAR EVERYONE!!!!!

Zulma

[Heartshome]

Thank you for this wonderful post. I admit that the person's response that drove this thought hit home with me. I started wondering if perhaps they were correct. Maybe everyone here is just having a hard time dealing with anxiety, depression, neuroticism, etc.

But then I realized that was not the case. What would be the odds that so many confused people would end up in the same forum with the same experiences, over and over and over?

Your thoughtful comments and analysis (along with those of everyone else here) have been so helpful to me these past few months.

I will arrive at the conclusion that this is all in my head, only to read of someone who had normal tests and MRIs for 12 years before being diagnosed. That sets me off again.

Should I continue seeking answers to what is wrong with me, or should I just shelve it until things get really bad again? (I've been feeling great for the past five weeks with very few symptoms).

I guess the answer will come in it's own good time. If it's not MS (and I pray that it's not), then I will have to learn to live with the symptoms and stop worring over something I can't control. Either way, the people here are wonderfully wise and caring. You all have been a blessing to me and I thank you!

[Jazzyfizzle]

Quix, this really hit home with me today. Just this morning, the thought was going through my mind.. 'I'm not going to try to find answers anymore, I am just going to deal with the diabetes, and just live out what I have left, as best as possible, and try to find the answer any longer, even though I have no doubt there is one'.
Maybe I am still having a miniature meltdown, because I'm normally strong willed.

I guess luckily for myself, I have never, ever doubted for even a second, that there is something wrong with me. I wasn't like this before and there is a reason I am now.

I think sometimes, other people are not that fortunate, to have that solid fact in their mind, or family (thats the worst, imo) or doctors, have told them there is nothing wrong.
Truly, maybe it is not MS, but I also believe you know when something is wrong with you.

Your words are perfect, Quix. I second all the great messages written before mine.

A blessed New Year to all

Jazzy

[sllowe]

Hi!

I'm so glad you've written this up for us.  It's nice to read something put together so well, especially when it's been floating around in your head for awhile, and then putting it to print so it helps others too, as I'm sure this has, and will continue to.

Somehow, (and we can call it one of those miracles we discuss oftentimes when we can't articulate it, or because it's so deeply rooted there is no other way to descibe) this group of forum folks has the "miracle" mix.  We, even reluctantly sometimes, spill our hearts out to one another, reaveal our fears, and give unconditional love and hope, our experiences, opinions, facts, and compassion.

I don't know how this has happened, and I don't rightly care to analyze it.  I'm just so grateful and glad that I'm a part of this current "miracle" and I'm glad that we've been able share and see all of this not only together but at the same time.  It's proof, our evidence, that we know exactly what we are doing, we know our bodies and minds (even when they trick us out and reap havoc on us), and gosh durrnit we are making a difference!

Much love to all!  
Be well,
SL

[shoshin]

Thanks, Quix. This post really resonated with me. I think the support that this forum gives to people who are undiagnosed or struggling with getting the right help from doctors is invaluable and on the whole very balanced.

I certainly struggled with a lot of self-doubt before I was diagnosed with MS. Even when I scheduled the appointment with the neuro who eventually diagnosed me, I thought this is so stupid, why am I making all this effort just so a new doctor can tell me the same things I’ve already heard?. How do I know when to give up and just accept what they're telling me? How do I deal with the cognitive dissonance from the doctors saying one thing and my subjective experience telling me another?

Sometimes, it really does just take a different doctor looking at things. I saw one neuro in late June who said I had "hypersensitive nerves" and should stop worrying so much. I saw a new neuro in early August who was willing to start over at the beginning with an open mind and run the right tests to figure out what was really going on. I wasn't that different in the six weeks between those two appointments so I'm definitely an example of how a second (or third) opinion sometimes makes all the difference in the world.

I think it's hard for people like me who don't have a medical background to judge when a doctor is being thorough enough. I don't know if the first two neuros I saw made reasonable assumptions and the third neuro diagnosed me because he was in a more specialized setting where more thorough (perhaps too much so) testing was the norm. Or if the first two were too quick to put me in a box and label it and then didn't recognize the cues that maybe something else was going on. But I do know that finally getting a diagnosis that made sense was a tremendous relief.

[Heather3418]

I am in total agreement with Quix.  I know this has been on her mind for awhile and she was anxious to speak on the subject.  She puts her thoughts on "paper" so eloquently, as always.

She points out so correctly, that this forum is a place of support and a place to share experiences.  Many people have come on here out of desperation, because they have been labeled by their families and their doctor's as hypochondriacs.  This hurts.  I have been there myself.  It's an awful feeling to be doubted by your friends, family and especially your doctor, when you KNOW that something is wrong in your body.

Our "jobs" as human beings, is compassion and caring for others.  We have alot to share with others.  That's what makes this forum stand out from all the rest on the Internet and I hope to keep it that way, with your help.

Thank you Quix for saying what so many of us have been wanting to say...just not knowing how to put it into words.

God Bless you Quix and of course all of our forum members,
Heather    

[essdipity]

First, thank you both for your very thoughtful comments. It takes a lot of real listening to reach a point where it's possible both to stand back objectively and to get way involved, subjectively, and to do each of these absolutely appropriately. I've seen evidence here over and over that this can be done and done well.

For myself, my lack of medical knowlege always makes me hesitate to say anything that even remotely sounds like a pronouncement, and I hope I've never implied that I'm an authority on anything. Like so many others, I simply offer my experiences when they seem to parallel what's going on with someone else. I also notice from time to time that I'll read a post from someone who seems mostly fearful, and with a pattern that might indicate that fear is largely what's at work. Of course I don't know that for sure, but I do see that others jump in too to provide a sort of balance and reassurance that the posert most likely needs immediately. In such cases I always hope that the poster does feel better from interaction with the forum, and that he or she knows that temporary fear or anxiety is much better than permanent MS.

But the big point I'm struggling to express is that I see very little derision of doctors' opinions here just for the sake of derision. I think doctors are given the benefit of the doubt virtually always, unless or until they prove themselves not worthy of it. It's true that the weinie roasts get really hot and the voodoo dolls get stuck over and over, but I've never seen that happen when the doctor hasn't demonstrated true jerkhood. Some, the lazy ones, are particularly maddening, especially when they pass off a bored or hurried 5-minute exam for the real thing. Others are just plain incompetent, or so far behind the curve in medical knowlege that they should start over. But even all these folks usually get more than one chance to merit membership in the Jerk Hall of Fame.

I'm thinking that if this forum once in a while might seem tainted by skepticism and rejection of the medical community, it may be because those who are frustrated when the process breaks down for them are more likely to seek answers here. Perhaps the great majority of MS sufferers and those with similar symptoms do get straightforward answers in the normal course of events, and we don't hear from many of these people. So here we have a microcosm that might be a bit unbalanced when it comes to doctors overall. But we do get many many balanced comments and helpful ideas from our members, especially those who come and stay.

Of course, we get a lot more than that, including wonderful humor, but then that's not the topic of Quix's thread. I look forward to reading what others feel on this.

Happy New Year,  ess

[grannyhotwheels]

I really appreciate you writing this post.  I do agree with you.  I have never read any one's post and not believed them.  I truly believe that we all know our own bodies.  We know if something is really wrong.

When my neuro told me it was all in my head and I needed a shrink instead of a neuro I almost went off the deep end.  My husband was with me when he said that and I really felt like my husband believed my neuro.

It was very hard for a while but eventually even my husband realized I could not be making the things up that was happening to my body.  Thankfully the next neuro I went to was one that specialized in MS.  It took her 2 almost 3 years to finally put a lable on me but ruling out everything else can be quite time consuming.  I also lived a pretty good distance away and wasn't able to see her very often.

I didn't feel like she was moving fast enough and that's when together with my primary doctor I went to the Mayo.  It was sorta like she had to hear it from someone else before she would actually say MS.

I know that there are a whole lot of our members that will end up not having MS.  The reason I keep encouraging them is not to go to doctor after doctor until they find one that will say what they want, but I encourage them in the fact that they have heard just like I did that nothing was wrong with them and deep down they know their own bodies and know there is something else wrong.  I feel like sense I was in their shoes then I should encourage them to look for answers.  I agree with you that we want our friends to look for answers which may or may not be MS.

When a person says that one of my eyelids is drooping a tad bit and could this be MS?  Well, yes it could but I doubt it is very seriously.  Allergies can cause one of your eyes to swell a little, thus looking like it may be drooping.  

I try to leave the medical aspect of everything up to you and others here that know what the heck they are talking about.  Lord knows I don't.  I just want to be their friend.  I want to be there for them because they are in pain and don't know why or maybe like my friend I met last night who just found out she had MS and needed to talk.

We all have our jobs here and I know that everyone does their job very well.

I totally agree with you in that we have walked and are walking a good solid line in the dance between belief and rejection.  This group is amazing.  To me though the real hero and success to this group is you.

When I first came on here almost every post that was on here started out with (Quix.. Can you tell..._)  You know what I mean don 't you?  The forum has grown so much now that you can not possibly do for all like before.  I wouldn't think any way.  But, somehow you always seem to still be able to help those who ask you to.

Quix, you are truly an inspiration to me and you have made my life much more fulfilling just by knowing you.  I would like to thank you for all that you do.  I know that we all fail to thank those of you that do so much on here.  I would like to do that now  by saying thank you for always being there, for giving us the correction that we needed and the direction that we needed also.  Just like in the post above you are once again giving us guidence and counseling.  

I pray that you will never change in the way you approach people here and I have a pretty good idea that your a little to stubborn for change anyway.  Am I right? hahaha  Sorry, I had to throw that in there.

I'm sorry this is so long but once again I couldn't find a place to stop so I just kept on typing.  I don't have a clue where the words came from.hahaha

I'll be praying,
Carol