Is It Helpful or Harmful to Blame the Doctor?

Today I received a comment on my Journal Entry, "My Journey to Diagnosis."  A newcomer to MedHelp commented on it and found it disturbing that I focused on my anger toward the neurologist who failed to acknowledge that I had any real problems.  He advises a broader and more forgiving world-view that moves past "finger-pointing."  His comment is public record so I am reprinting it here.  I am also reprinting my response to his thoughts.

The forum has previously discussed the topic of being hard on doctors for their treatment of us.  We first considered it after someone accused us of having an overall negative attitude toward Neurologists.  The topic has come up again and some of you might want to discuss your feelings with each other, with Jake or in general.  Maybe some lurking readers would like to comment.

Jake10's Comment:

"I understand what you're trying to do and in many ways, it's a great thing. On the other hand, there seems to be a significant amount of finger pointing and blaming on your own part. Not only that, but you are clearly acting as if you knew what your doctor was thinking and implying with his word choices. I have been to doctors and felt as though they gave me looks I didn't deserve or said something that didn't feel necessarily helpful to me as a patient. I, too, had the feelings you experienced and got upset, vowed to never go to those doctors again, and would tell other people about my experiences.

I grew in age and became more knowledgable on the subject of "life" through my journeys just as everyone else does. At some point I started doing a lot of self-reflecting, and I mean every time I had the chance. I started working through past situations that apparently still bothered me for various reasons and put myself in the other person's shoes. I don't mean just one pair, I mean every pair I thought they might have. In other words, we have a multitude of different life-aspects but occasionally we get trapped in a single aspect of ourselves. If we can't break away from this type of thinking it can be detrimental to ourselves and everyone around us. We must be able to acknowledge multiple aspects of our own lives in order stay on track personally. Likewise, we must be able to acknowledge the multiple aspects of the people we come into contact and interact with so to stay on track as a society.

Thinking this way takes time and understanding, and it also takes stepping out of your own shoes which isn't something anyone is very comfortable doing. However, if you take that step in the right direction you'll always be a step ahead... ""
_________________________________________________________

My response:

The MS Forum is about far more than MS.  It has, as a subtheme, the vast amount of damage an uncaring and dismissive physician can wreak on a person seeking a diagnosis.  Many people are losing function in their bodies and losing their livelihood by undiagnosed neurologic disease.  We have as many or more undiagnosed members of our forum as those with a diagnosis.  They come to us, sometimes  with years of being told their problems are caused by their own stress and weakness or worse, that their problems are merely feigned in order to obtain attention.  Their spirits are nearly broken by these words and many have about given up.

Our forum is often focused on helping these people learn to put those words behind them and search out a physician who is more caring and compassionate, and often more capable.  It seems incomprehensible to some people that they should ever doubt a physician or be angry at their treatment.  But, these people have become immobilized by their own fear of being told this again or by the belief that they are, somehow, defective.   In order to help them seek the answers they need we sometimes "play up" the anger at a dismissive neurologist and mock the personality defects of the doctors.  Anger is a powerful tool to helping people move forward and advocate for themselves.  It also can provide a great deal of tension-releasing humor.  And once people are out of the grips of those doctors, they can move ahead and - as you advocate - put life into a better perspective.  

Within the context of MS this is important.  It is clear that the earlier that the MS meds are used after the appearance of the disease, the more effective they are.  So time lost with a patronizing or lazy neurologist is truly time lost and disability gained.  There IS a true urgency to press for diagnosis.  This is where the anger is therapuetic.  

My journal article was written for these people.  It allows them to see that even a physician can be mocked and derided by another physician.  So, even though this is a public internet document, it is intended for those who come to the forum whipped and beaten.  The technique is effective.  The intent is not to perseverate on the misdeeds, but to use the knowledge that physicians are not omnipotent to help people move forward.

So, you saw me out of context.  I personally don't care what you think of me.  But, you owe it to others who also read the journal, to know to whom I was writing and why I chose to emphasize the points I emphasized.

In fact, my neurologist did make many comments to me, not explored in my article, which allowed me, as a fellow physician, to know that he was indeed accusing me of manufacturing my symptoms to gain attention.  Many other here on the forum have literally been told, as their legs lose function, to "Get a grip!" and to "Go get a life."  Do I hold my colleagues to a higher standard?  Indeed, I do.  People come to a physician at their weakest and most vulnerable.  Harsh words, while easily held back - as you have learned to do - can do real damage.

On the MS Forum we have previously explored the theme of "blame your doctor."  We have analyzed to what extent we focus on this and for what reason.  We have also discussed whether it is a harmful approach or whether it is productive.  I invite you to transfer your psychological advice to the forum.  

Ideas anyone?

Quix

[pennst8r]

VERY well spoken! You are truly a goddess of advocacy for yoursefl and all of us. I need people like that on my staff. Want a job advocating for individual with special needs (needs more special than our own)? I'm hiring.

I guess this situation is part of my problem with the way comments to journal entries, etc are set up on this site. People who know nothing of which you speak are able to put in their uneducated two cents and feelings can be hurt. I think they should stay with the community in whihc they were initiated.

I agree with you 100% that you should NOT care on eiota what this person thinks of you. He has not experienced any of the shamefully degrading treatment you have been through.

I am proud of you for handling your response so well. Many of us would have reacted in a less dignified manner. You go, girl! You're my hero!

Penn

[Fluffysmom]

I personally have felt that the ability to come here and have the support of many while going through the anguish of two neurologists treating me in a dismissive and belittling manner while I was in misery, first with acute onset tremors, then a brain MRI full of lesions that the radiologist said was consistent with MS, then overwhelming dizziness and loss of balance and extreme fatigue, blurred vision, and more.

Having people to discuss the psychological battering that comes of being told that you're not going through what is taking away life as you knew it with, and having them agree that it was terrible and share there own stories gave me the strength to crawl out of bed and keep searching for answers.  

It was cathartic to tell of me experiences in detail, sharing my humiliation, and not being judged or second -guessed, but being supported and cared for. Having others show anger that I was treated in such a manner allowed me to feel my anger instead of hopelessness.  The mock "roasting" of doctor's who's "treatment" has done us harm is a great group release of powerlessness and an occasion to turn negative emotions into laughter.

I have become better and better at self-advocating.  I am now going to going to see an MS specialist because of the courage, determination and strength that these people shared with me.  I have also been able to let go of much of my anger and the past neurologist's appointments, the bungling lumbar puncture, and all the rest because of the healthy expression of all of it here.  We are not stuck in the negative, but searching for a more positive future.

Therefore, in my opinion, it is indeed helpful to blame the doctor.

Kathy

[Nerve_Wrecked]

Excellent rebuttal Quix.

I am one of those fortunate few who, although undiagnosed, has never been accused of manufacturing symptoms, or who's symptoms were related to anxiety (thanks psych eval for keeping that out of the doc's minds).

I have been undiagnosed, and actually, until recently, largely dismissed in general, with a "well, let's worry about ____ now, that's your concern" for almost 3 years. Still no one's looked at the big picture all together. I have been to 2 neurologists, both were dismissive to some level, the second hugely so.

I am the FIRST person to say "A doctor's just a person, they don't have to know everything". I am the first person to understand that as a human being, doctors make mistakes. But for the majority of the people here the mistakes that are being made aren't just errors on testing protocol, they are in interpersonal relations. Who do we turn to when we need help? Especially those of us here with undiagnosed neurological disease? I mean, this is our Central Nervous System. We aren't talking about a sore knee, we're talking of the body that controls our movements, our thought process, our pain, and we're scared, and we want 1) someone to work on fiding out what's wrong (even if it takes some time), and 2) to be treated with dignity while they do it.

I think sharing your story, ESPECIALLY as a doctor, gives every one of us who's ever been in Limboland a little more humanity and a lot more dignity. It's not just us, it can happen to anyone.  This isn't about bad-mouthing doctors who don't see things our way, it's about seeing the fault (and helping to pick up our friends, when they fall) in the "I don't see anything, so it's not there" mentality. I mean, without seriously strong microscopes, we don't see atoms, but they are there. Unseeable doesn't mean non-existant, and unfortunately a lot of the neurologists out there forget, or don't know that.

It's great that Jake10 found inner peace, or self-realization, or whatever (not trying to be snide, just not sure what word to use), but a lof ot us can't even find outter peace due to the lack of care by our neurologists or primary care practitioners. This is a matter of truth, not a matter of placing blame. Quix happens to have been one of us, who happens to have a Medical Degree.

Frankly, if she wanted to toss blame, and a pile of poop at her old neurologist, I'd back her, but she's here, with a postive outlook, a unbelievable amount of advice and assistance, and supportive words for those of us who get knocked down by another "you should just be happy your brain is healthy" neurologist appointment.

Thanks Quix, for all your help, advice, support and grace.
As always, it's top notch! I wish I was a few years younger, and you were still working ;)

A little compassion, and a lot of LISTENING (something doctors seem to have forgotten how to due) goes a long long way.

Christine
(un-dx)

[santana8]

A lot of what you said makes sense, and I am not saying that your ideas are wrong, only unrealistic!  You see I was one of those people who looked to see the good in everyone even in the ones who didn't deserve my efforts!  I definaltely trusted doctors, afterall, I had no real reason not to!

Two years ago I was standing in the grocery store with my then five year old son, when all of a sudden my vision/brain went haywire!   I had no idea what was wrong with me at this time, but suspected a medication switch that had taken place six weeks prior. The SSRI that I had been on for 14 years for depression, and the anxiety medication that I was taking for the panic disorder that I have had most of my life was abruptly jerked away and replaced with a different SSRI, which by the way has a lot of visual side effects.

when I made it home I called the doctor who changed my medication and told him that my vision was distorted and the lights were clashing all around me.  His response to me was that is unheard of after six weeks  on this medication.  This doctor ignored my pleas for help for the next week. Meanwhile, my vision  and thinking deteriorated rapidly. At this point my vision was so distorted that I could not even recognize my own childrens faces or even my own, and had extreme photophobia and could not tolerate any form of light! Still this doctor wanted me to wait three weeks for an appointment, and said he was going to raise the dose of the new medication.

My mother drove me to his office, and I sat there in tears, confused and could hardly hold a train of thought, almost blinded by the distorted vision and photophobia. The doctor came out, I thought to see me, but he walked right passed me and took another patient back. The receptionist said that he could not see me until my appointment and to go to the ER.

So I did, complaining of sudden vision changes and confusion and by this time had back pain, neck  pain, and shooting leg pain down both legs.  I tried to tell them about the medication change, but they didn't know anything about these medications and told me to call the doctor who changed them. This is the one who walked right passed me in his office! They done a CT scan which was clear and a diabetes test that was negative, and sent me home.

I stayed home for another week, trying to wait on my appointment with the doctor, but I was actually getting worse by the hour. I stopped taking the new medicine because I thought it was causing my vision and other symptoms!  I kept getting worse, I couldn't eat or drink anything because I would vomit it straight back up, and also had diareah!  I had lost 30 pounds in two  weeks.

I went to another ER with the same complaints but only more severe.  The ER doctor thought that I was crazy and had me taken in hand cuffs in a police car to a phsyciatric hospital. I stayed there a week and they didn't put me back on my medication. They did nothing to help me, and sent me home.

I went to a private phsyciatrist, and was so sick that I couldn't even comunicate with him. He told my husband that my medications were messed up and he immediately put me back on all of my medication.  Within three weeks all of the phsyciatric symptoms had stabalized, but my vision and  other neurological symptoms had not.

It took four eye doctors to find one who would give me a visual field test, because I had 20/20 VA, and they too thought that I was making it all up. The one who actually  gave me the test directly said that I couldn't fake this test and that my symptoms were unbelievable and out of the box!

The visual field test showed an inferior harmonious quadrantopsia, which is a loss of 1/4 of the vision field in both eyes. Then he said OH,  you may have had a stroke and we need to get you to a neurologist!  THIS WAS FIVE MONTHS AFTER THE ONSET!!!!

When I finally got to the neurologist, EIGHT MONTHS LATER, because of waiting three months for an opening, he done an MRI of my brain, which showed 10 white matter lesions , most of which were directly over the visual pathways!

For the past two years I have been here on the MS forum waiting for a definite DX.  My neuro thinks that I had ADEM, acute dessiminated encephalomyelitis(inflamation (inflammation) of the brain and spinal cord), but since the acute phase passed while I was trying to convince these doctors that I could not see, the test to distinguish between ADEM and MS will not show anything that would give a clue as to which one it was. So I have been stuck between the two for two years, being watched for MS.

I could have received steriods to take the inflamation (inflammation) down in my brain, had just one of these doctors listened to thier patient!  By the time that they found the lesions, it was too late for the steriods to work. I could have been mostly recovered in six months, had I received the steriods. Instead, two years of my life have been spent in pain and misery!  Two years that no one can give back to me!

One doctor, maybe I can put myself in thier shoes and understand, but  EIGHT OF THEM!  I don't understand how any of them could mistake sudden vision loss for a phsyciatric condition.  SUDDEN VISION LOSS IS CAUSED BY NEUROLOGICAL  CAUSES , NOT  PHSYCIATRIC CAUSES!

Should I blame every doctor for the mistakes of these eight doctors, probally not!  Should I trust every word that a doctor tells me, definaltely not!!!!!

I didn't get my outlook from the MS forum, I got it from two years of pain and suffering at the hands of these doctors  in whom I trusted!!!

~Santana~

[ohwild]

I would like to put mt 2 cents worth in here.

When I first joined this Forum I read 'your journey to diagnoses' and found it extrememly helpful ,encouraging, and thought provoking.
It would seem to me that in Jake10's case he is on a 'journey of becoming self aware'  A journey of life anyway, and that he feels that everybody should be like him in their thoughts and actions,not taking into consideration the fact that many people have already done the soul searching,blaming themselves etc before reaching out to others in similar circumstances. We are all adults on this forum ,strong people ,made stronger through our interactions with each other and suport of each other. It may be that Jake10  has just started the soul searching phase!
The fact the he has read your journal is in its self encouraging as he seems unaware that there is an important aspect in life called HUMOUR, without this aspect we would all be depressed robots with nothing to offer anybody but self pity, and obligitory pats on the back which would mean nothing at all to anyone.
Your answer to him Quix was well thought out and explained the reasons behind your journal eloquently and politely, I dont think the he quite grasped the meaning of this forum and I hope he pops in and reads these posts,as it might enlighten him a little more.
The blaming of the doctor in many cases is right, especially when you look at the doctor as another person and not as a God who can heal all and knows all. It may well be that someone has a neuro or doctor who has no experience of MS and the devastaion caused by this chronic painful disease. But its not helpful when one of the above writes someone off as making up the symptoms due to their lack of knowledge in a particular field. After all they are not the ones suffering!!! and to be labelled as a 'time waster' is very hurtful and causes a lot of unnecessary anguish to un-diagnosed patients.

CJ :)

[MrsMunier]

Aloha Quix

I know its been 4 years for me, after 4 neurologists, 1 dermatologist, 1 Rheum. Dr, 1 ER Dr. and 1 Gen Practice Dr before they sent me to an MS specialist. The one Dr who realized I had MS was the  Dermatologist which was the 2nd Dr I seen. My MRI's show demylination but its not the classic lesions as the typical MS patient. So they disregarded my symptoms until recently I told my Gen Dr. that if they didn't do something soon I was going to be disabled. We pay good money for insurance, we also put our trust, and health into the hands of Dr's. I know they aren't 'God', but its like any other profession, if something is wrong with my car I will take it to the mechanic until its working right. Dr's have a few problems; the number one problem is they don't have the time to listen, some don't have the patience, some believe their words are gospel, and damn right we as patients deserve to be treated properly and not blown off. Its getting old and  maybe Jake will be able to see what the majority of us have been through, there are many of us going through hell from Dr's and its clearly not normal or right.

Its probably the hardest disease to diagnose, but doesn't mean we as patients should but put through the wringer trying to get a diagnosis. There needs to be more empathy in health care!

My few cents

Thanks for all of your valuable information and support. I view your information often.

MM

[ohwild]

Ah! I see now why you thought it was necessary to read Quix's journal, after reading your thread post in the neurology forum. Quix may of made a mistake in her post, and I see that she unreservedly apologised for it. But I do wonder why you are posting at all on Medhelp at all, as you seem to be so very knowlegeable.Are you here to impart your wisdom upon us or are you looking for suport, please don't take this as an affront to your intelligence it is just a question, and meant kindly. Do you suffer from anything,it may be that we can help you,there are many people here with all sorts of problems looking for answers.
CJ

[sllowe]

Jake's comments to your journal seemed sound advice for those who may be carrying a grudge that limited one's ability to move forward, or clouded their or other's judgement, or made them bitter, or for someone who was intentionally warping the minds of others (i.e. like a cult member or something freaky like that), for their own greater good or the good of a evil cause.

Obviously, Jake in his own mind and self  "all mighty philosophical wisdom" thought he was doing you and all of us some great favor by saving us from our negative or improper thinking due to blame and distrust.  Which we ALL know is not the case.

Quix - You discussed the effects of damage and displaced anger in a way that we could all relate to, give in to, have a chuckle or cry about with one another.  Our forum is a safe place we can do this in a healthy manner.  We are not enraged histerical finger pointers.  We are "realists."  We take our members at face value and we help one another in the best way we can considering the members personality and feelings 1st and foremost!

This JAKE did not know you at all, nor what you and all do on a day-to-day basis.  He did not get to know us and "see" 1st hand how we get through each and every day in our lives by.... -getting up -  showing up - scrubbing up for each and every task.

I hope your comments to him were enlightening, however, people like this did not deserve such thorough indepth explanation.  HOWEVER, by doing so, he has produced this thread, which gets to the very core of what many of us are dealing with.  

Quix, you say it like it is.   If we are off - we say so.  You and many others set the necessary tone.

xoxox
Shelly

[sllowe]

Unfortunately, some doctors are not thorough, nor do they deserve the title of "doctor." This is not something exclusive to our members experiences.  Listen to friends, colleagues, and family members.  It is an unfortunate truth.  Doctors admit this.

We are fortunate to have such a true professional by our side.  We are fortunate to have factual guidance, subject matter expertise, true compassion and an educated doctor in our house who chooses to share these talents despite her own physical limitations.

Here's to all of those who have never lost "passion" for their field of expertise.  And, to all of those who use sound and fair judgement while speaking to, guiding, and education others!

We are all very, very, blessed and though it's hard to get through sometimes, we do so, together!
((((TEAM HUGS))))
Shelly

[Sunnytoday]

Thank you, this thread is a life-saver. I feel so "beat-up" right now. I went to a neuro a month ago, whom, after the first visit, I thought would help.

Since then, I've went through another major flare and when I called the first time they wouldn't respond, and the second time they only gave me an appt. a month away with the advice to "handle it".

They still haven't read my MRI or gotten the radiologist report and it's been FIVE weeks (i checked the calendar becuase I thought my brain fog was telling me wrong).

I know I'm only "new" to the journey here, but I've been dealing with this for two years and I thought that perhaps the neuro would be competent enough to understand that we have to at least test for mimics, or do extra testing or something.

Not just sit here and watch everything I love to do become to difficult or impossible in the span of a few months. I'm having trouble walking, driving, going to school and thinking, sleeping becuase of the pain, and I can't even go shopping with friends anymore and my mom is talking about a wheel-chair if my legs give out like my feet did.

In these moments, i feel like roasting my neuro... when I'm standing somewhere and my friends are wondering why I can't move any faster and I'm going so slow that they have to take my arms and pull/carry me to where we are going and I'm crying inside. I'm NOT asking my neuro to be God, just to simply do his job and try to find out what is going on.

Thanks for being here,
~Sunnytoday~

[Heather3418]

To Jake-

Five years of my life were lost and most probably more damage done to my brain, because of the kinds of doctor's we talk about here on the Forum.  Of course there really ARE some good doctor's out there.  We praise those doctor's all the time on the Forum.

I cannot begin to tell you how the dismissive Neurologist in my life, put me into a deep depression and years of self-doubt.  In all frankness Jake, there are many here that may admit that they have been close to considering suicide, rather than continue to fight for answers.  No longer able to find anyone to listen, while they endure unbearable pain.

Had it not been for the Forum where we can openly discuss our frustrations and yes, life-altering negative comments from some of these doctors; there may have been a few of us that would no longer be here. Unfortunately choosing a life changing path, such as suicide. I truly believe that in my heart.

This Forum is vital to freely discuss our feelings with those that understand exactly where we are coming from.  Understanding what we endure.  I cannot begin to count how much quality of life has been lost by so many, because of the way they have been dismissed by many doctors that claim to have gone to medical school.

It's my opinion that the majority of these dismissive doctor's that continue to practice in this way, should be brought before the AMA and disciplined.  There are some doctors that are destroying people's lives, by playing games with their patients.  Games that are costing some, the urgent care of disease modifying drugs, to hopefully slow this disease down.  These are years of their lives that cannot be replaced.  Once the damage from MS is done, it's done.

Thank God we have this Forum to come and share our thoughts with so many.  I truly believe that this Forum has actually saved lives.  I will also bet, that many on here, will tell you, this Forum HAS saved their life.

I hope that you will understand what Quix and the others are trying to say.  When it comes to MS and many other disorders, weeks, months and years, are lost from a patient's life forever, due to so many doctor's that treat them as "fakers."

Heather

[doni54]

That was beautifully written, as usual.  I am one of those who has seeked an answer for years as you already know.  If I had been blessed to have found a physician who really listened to me about my symptoms I wouldn't be where I am today.

Today I am uninsured and financially strapped so I can't seek that elusive dx.  Years ago I had the means to travel this road and would have done so no matter what the cost.  None of the many drs I visited over the years cared to listen to ME!!  I am the one who knows my body better than anyone else, why wouldn't they listen?  

So yes, I agree with everything you said.  I am ANGRY because I can't walk most days, I am starting to really fear blindness,  I can't talk to my family some days cause my words won't form,  I wake somedays in a fog and have no use of the wonderful brain I have always been so proud of.........so yes I am ANGRY!!!!!  I try to work in my flower garden only to pay for it for days afterward with spasms so hard I have to grit my teeth not to scream out loud.........so yes I am ANGRY!!!!!!!  Somedays (like the past two) I can only sit and cry and feel sorry for myself which is far out of character for me.................so yes I am ANGRY!!!!  I tend to not plan too much for the future because my symptoms are becoming so dibilitating..............so yes I am ANGRY!!!!!!!!!!!!!!!

There are many compassionate and caring drs out there, but they are so few and far between it takes many trips to bad drs and still sometimes never being lucky enough to find one of the good ones.  This is not right, and it affects millions of innocent people who need to know what is happening to them so that they can seek effective treatment.

Sorry if I sound too harsh, it has just been a bad few days for me and I needed to vent.  Don't get me wrong I mean everything I've said, I just hope I haven't offended anyone by being so harsh.

I love you all and thank you for always being here for me, you are all very special.

Hugs
doni

[essdipity]

How can you NOT blame doctors when it is overwhelmingly clear that they have screwed up but refused to admit it or to do anything to remedy their mistakes?

My general view of doctors is completely negative, with specific exceptions that I make unhesitatingly. This stems from 7 years ago, when (because a doctor was completely reckless in prescibing and did not monitor me as required, and because at the time I didn't know better) I went through the most agonizing time of my life. I'm usually pretty good with words and descriptions, but I have no words that can tell the unremitting horror of that time. I experienced a protracted withdrawal syndrome after quitting Klonopin abruptly. As I look back, I see that the physical and emotional stress of that time also brought on my first experience of MS. Since the intense part of this lasted 5 months, it's hard to know which symptoms were caused by which, but I guess it really doesn't matter now.

Klonopin is one of the benzodiazepine drugs, others being Xanax, Ativan and so on. These drugs are stored in the fatty tissues of the body, and they can be very dangerous. It is well-documented that acute and protracted withdrawals can occur, but  I had an ER doctor tell me this is impossible. People don't get that kind of withdrawal. At that point I had in desperation already done a lot of web research, so I know he was dead wrong. His brilliant answer to this was to say, "Yes, but it only happens to 2 or 3 percent, so it can't be happening to you." How's that for idiocy? This man supposedly was highly trained in science!

I won't go into all the rest that occurred because of this illness. I don't like thinking about it in detail---it's too awful. But the same runaround went on seemingly forever. Anyone who's interested can look up Stevie Nix's experience, which is or was chronicled on the web. Mine was different only in that it was 3 times as long, with MS thrown in for good measure. Doctor after doctor refused to listen, and treated me as if I were either severely depressed or mentally incompetent.

After that I went through a long time when I sought medical help only as a last resort. I didn't trust any doctor. Some conditions I have, such as hypothyroidism, made it necessary to go in, but I was totally creeped out for a couple of years. Then strange symptoms came back, some like in that time of horror, others new. I had no choice but to try to find help. At least I wasn't treated like Exhibit A,  but I found I was forced to be on the neuro merry-go-round, with its own set of experiences. Radiologists continually misread my MRIs, and neuros didn't even look at them but relied on the erroneous conclusions of the MRI reports. It was suggested that I was stressed. Hah. Who wouldn't be? Months and years went by, with me going into remission a few times and being glad to forget about Whatever It Was.

But then I was back on the carousel. Had all the usual tests, some of which were abnormal. Had a bunch of very unusual tests, really looking for the zebra when the horse was there all along, neighing and whinnying. Was sent for a carotid ultrasound to explain the brain ischemia I didn't have (my BP is always around 110/70). Finally I learned enough---from this forum!!!!---and not from some nincompoop doctor, to find the right resources.

Now I at least am getting treatment. I have a neuro who borders on rudeness and who clearly isn't much interested, but compared to the rest he's reasonably okay. He made a diagnosis. And as I said, at least I am getting treatment.

So I should not blame doctors? Who in heavens' name should I blame, then, myself? If it hadn't been for my own advocacy for myself, even from the depths of pain, I'm quite sure I'd be dead. Period. I had no one else, but I did have myself. My family continually misunderstood, or worse. But I'm a strong person, and will continue to be as long as I have the mental capacity to be so. I have to be.

And once again, I'm so glad I had the capacity to find this forum. It has taught me an enormous amount, and it has given me wonderful friends. people who really do understand. Now I don't have to rely on just me, and it's the greatest relief in the world.

ess

[wishforchange]

Wow.  This has aroused so much in so many people.  When I read Quix's journal I was awed at both her humility and honesty to share with the world her journey.  And to do it in order to help others.  For an experienced and clearly very intelligent doctor to have such absolute insight into the experiences of the undiagnosed patient, and to offer her perspective as someone who has been on both sides of the diagnostic route personally and professionally, I find it a great shame that any person would criticize her.  As is her way, she has taken this maturely and used the criticism to again enable us all to express ourselves.  Quix you are one in a million.  You work time and again for the benefit of all of us here, not getting caught up in your own issues as people like myself can do.  We all of us on this forum understand the reasons for your journal entry, and you are the first to encourage people to trust their doctors when the time is right.  It was because of you I had the courage to take my visual problems to the hospital.  I just hope that you are not in any way hurting inside by any comments, you know you have our support.  For everyone here who has ever been humiliated or demeaned by a doctor whilst trying to continue with a normal life and a badly behaving body, we need the support of each other.  To have the support of a trained doctor gives us that extra validity to continue with not submitting to despair and self-doubt.  I can only say that your journal entry, and your previous responses to my posts, (along with others) have been a lifeline for me and pulled me out of despair beyond what anything or anyone else has offered.  I do not say this lightly.  If ever you have a moment of self-doubt, you know that there is at least one person here who values you highly, and I am one of many.  We understand what you are about and are priviliged to have us with you.

[biowham]

Quix, Jake sounds young and/or like somebody who's just made a discovery they think no one else has made and feels that it's necessary for them to proselytize it to all who will listen (or read).  I'm sure it's very exciting to come to the realization that sometimes, your perception of the world is about YOU, not about THEM. Sounds like he's also been doing a little bit of reading and picking up some standard-issue sayings to add to the advice.

But we all know from experience reading here and from our own experiences that what we have here is an enormous diversity of people--background, age, sex, socioeconomic status, education, location, psychiatric history, medical history, on and on--who have a repeatedly single, common experience: dismissive doctors whose inability to focus on the patient at hand rather than the Patient as an Average has led to enormous levels of stress and self doubt, serious and costly delays in diagnosis and treatment, and the pain of living with a debilitating neurological disease that no one will name. With that diversity of background and still that commonality of experience, I'd say that little Jake doesn't really have a clue what he's talking about. You were a lot nicer than I would have been (of course).

So, he can waggle his newly aware finger at you or anyone else, but that doesn't change the fact that you are accurately addressing a commonality of experience here with a true empathetic and sympathetic understanding of that experience and how to survive it. Would that all MDs had that capacity.

Bio

[slightlybroken]

You bet, it's helpful to blame doctors when it's called for. Why should a doctor be placed on a pedestal? We get mad whenever we pay for a service and it's not done right. Why should going to a doctor that doesn't go the extra mile to get a DX or doesn't do what's right for you, not go into that category? We are paying for a service aren't we?

I realize that doctors are human and make mistakes and they aren't God but I believe and I have experience with doctors who would never admit to those mistakes and they DO act like they are God. I don't think ALL doctors are bad but there is some out there and many of us have experienced that. I just believe those bad doctors have lost there way in a since. Why did they get into the profession but to help people and make them better? But they didn't or didn't even try. Why should we not be able to complain?

I believe that talking things out is the best way to get over anything and move on. It's not good to hold things in. This forum helps people through that. It's a release, for the good. Yes, we roast bad neuros and we give our opinions on how someone is treated, but is that really bad. NO! It's a way to get through the hard times and not lose faith. It's not like we tell people to write the whole medical community off. We tell them to find someone that will listen to their problems and treat them with respect. We as patients, should be treated with respect and not dismissed when we have a problems.

When I read Quix's story of her journey to a DX, I found it truly inspirational. I did not take from it, anything negative. I don't see how you could. It gave me hope in finding a doctor, that she eventually found, and getting a DX. You would think too that since she was in the club herself (being a doctor) that she would have been treated differently than all of us, but she wasn't. Even she was dismissed so she can sympathize with people who have had similar experiences.

We all have our own journeys to a DX. Some of us is just starting and some of us know what our DX is. Some of us had short journeys and some of will take the scenic route (the long journey). It's all individual, just like MS. Why should someone comment negatively about someones journey when that was THEIR personal experience. The person who comment on your experience is the only negative one that I see.

We as a forum can relate to each other through symptoms, doctors, experiences etc.. We support each other and want to connect with someone with similar experiences so we don't feel alone in this process. How is that not stepping into someone else's shoes? Should we dismiss the people who have had a doctor dismiss them. I THINK NOT!

Quix does step into other people's shoes. She's been there and done that. She helps people through her endless knowledge and her wonderful insight. BUT she also brings her personal experience to the table and encourages people to not to give up....to keep trying..and they'll find the answers once you find the right doctor. How is that a bad thing???!!!!

[essdipity]

I agree with Bio that Jake shows a sophomoric mindset and the wisdom that only someone who thinks in absolutes can project. I too imagine he's quite young.

Here's the acid test for our friend Jake. Let him or someone he loves go through just a brief taste of what Quix and nearly all of us have been burdened with, and then see how well his lofty and transcendant philosophy survives.

ess

[Deb61]

I don't mean to be sarcastic or rude, but I think Jake should consider walking a mile in someone's shoes that has walked miles and miles going this way and that without a diagnosis --all the time losing your ability to walk, talk, think clearly, eat, and go to the bathroom like a normal person.  I've been dismissed, referred to psychiatrists, misdiagnosed.  I lost some physical abilities that I will never have again.  Also, it's a lonely road when the pain and misery of the disease strips away your friends.  

I think of myself as a selfless person, so all this has been a very difficult trial for me to have these physical abilities (and mental ones) stripped away and try to stay as positive as I possibly could.  

I do have a little empathy for certain docs.  My PCP hadn't a clue what was ailing me, but he never thought of me as nuts or making up what was going on with me.  I stuck with him, even after my diagnosis.  He felt very bad (he told me) that he, himself couldn't put the puzzle pieces together for me sooner.  I would never roast someone like that.  

However, I have been referred to a psychiatrist one time and I was crushed and angry after going through years of h*** and back to figure out what was wrong.  Funny thing is that when I told my neuro about this, he was even angry with that guy and slammed his fist down (making me jump, LOL).  I felt validated for the first time ever!  There is some relief in getting validated, and I think this is a perfect place for getting some of that.

My advice for Jake, is to put his money where his mouth is and REALLY walk a mile in someone else's shoes.  There's always another way of looking at things.

Deb