All In Your Head

[drgnlny]

So I'm curious...how many of us were told we need to see a therapist, psychiatrist or were just depressed...in lieu of actually listening to our issues and very REAL symptoms???

How before dx and how many after?

Because I went through that myself...I'm sure they thought I was a hypochondriac at first...and I was told I was depressed and not taken seriously prior to dx...

But even WORSE...after I was dx....and before my first follow up SPINE MRI since my 2003 dx...when things suddenly changed in a bad way and I was going downhill fast and went to my doctors for help...my own Neuro of 6 years (and same one who dx'd me) actually went from saying I was in Secondary Progression to saying my MS was 'benign' and I was just 'depressed' in about a 4 month period!!!

And apparently because of that, Kaiser Neurology dept refused to do a flw up spine MRI that I requested - telling me it was 'medically unnecessary' - even though I had been dx'd based on spine lesions, not brain lesions (brain was clear).

I went to the Psych just so they wouldn't think I was being 'difficult' - anymore then they already probably did! And HE told me that my issues were NOT due to depression, that it sounded like I had serious medical problems, he was appauled my doctor's weren't taking me seriously and considering it all said I was handling things very well.

It was finally my PCP who ordered the dang spine MRI which showed the 12cm solid lesion (which originally were two small lesions)...hmmm - benign??? I think not!

But holy cow man! I've read SOOOO many stories where people with real issues are written off as being depressed or needing therapy or pysch care....really???

In today's world - I can't believe it's STILL happening!! I know MS isn't as high profile as cancer or diabetes, etc. but come on...there's a lot more knowledge about it now a days for all these doctors to still be treating us like we're just nuts!!

[MSW1963]

drgnlny, it is appalling that it continues to happen even today, with all the advances since I was dx 10yr ago.

Tonight all I can say about what you've pointed out is 'been there done that' and I wouldn't be surprised if it could happen again to me or any one of us.

[ms er since 06]

I was limping for 6 months and then developed severe pain in my feet (did not know it was nerve pain). I called to make an appointment with the doctor I had chosen when I went on the plan, and never met, but she was on vacation. I got the Chief of the Dept. of Primary Care in her place. After listening to me and watching me walk, he asked me how many drinks I have a week. I told him 8 over a 4 day period. He looked like he did not believe me and told me to make an appointment with my doctor when she came back from vacation. I went home, told my husband and my best friend - they could not believe it! The next day I walked in without an appointment, he actually saw me, and he said, "What brings you back here today?" I told him there was something wrong with me and "YOU ARE GOING TO FIND OUT WHAT IT IS". He asked me to do the heal to toe walk and I fell doing it. That's when he ordered an MRI and I was dx right after that. I got a copy of his notes from Medical Records and he put 8 drinks in quotes. Guess he didn't believe me.

[rdmc]

I presented, back in '96 with face and tongue pain. Saw a series of doctors (not a neurologist though) and I think most thought I was a nut case. Even had one ENT who wrote me a Rx for valium, told me it was all in my head, and raised his voice and said "Go home and quit thinking about your darn (and he used a stronger word) tongue." At that point, I gave up and quit going to doctors for awhile. Then my GP prescribed Neurontin and the pain got under control.

In 2001 had a fever, couldn't walk, ended up in the ER...had a bad UTI, but after I got out, I was referred to a neurologist. Went to see him and actually tripped as I was walking to the examining room, his comment, "You need to pick your feet up when you walk." Did one EMG and a 5 minute neuro exam and referred me to a PT. PT diagnosed foot drop.

It was the PT who told me that this was a neurological problem, and I finally got to a decent neuro and on my way to diagnosis. But even that first neuro, early on, put in her notes I might have functional overlay. Then I started getting MRIs and accumulating lesions.

Sad, sad, sad. My GP I've had for the past few years is the best doctor I've ever seen as far as not chalking things up to "psychological" issues. I thought I was having anxiety issues causing my BP to spike and complained to him about it., he ran blood tests and found it wasn't just anxiety, but a metabolic problem with high catecholamines. He says it's just a matter of finding a doctor who will REALLY listen to you, and put two and two together, but in this day and age, it's hard to do.

[kingrex]

Just to play Devil's Advocate...

I'm certain that the situation you've described has been played out many times...but you have to know that for every "legitimate" MS case/patient there are numerous other cases of "imagined" disease. I personally know more than one person who's convinced that she's sick, even as her exams say otherwise. We all know of these people, and unfortunately they make it difficult for all the rest.

Right now I'm having some pretty acute back problems, and I have a full-thickness rotator cuff tear in my shoulder, for which I'm scheduled for surgery on the 11th (I'm going to have to push it back a week for work-related issues). Right now, I'm in a lot of pain, but no doctor I see will prescribe any pain meds for me, in no small part because of the oxycodone prescription mills that have been publicized over the past couple of years. In essence, I'm a victim of others' illegitimate complaints. So I can relate.

To be honest - and I've said this before - there are patients on this forum whose perceptions also seem a bit skewed, with respect to how they're viewed by their physicians. "He looked at me like I was crazy" or "I know he thought I was nuts" - and other, similar comments - we read quite a few of these here. I'm sure that depression IS common among even legitimate MS patients and I wouldn't assume that being told that one is depressed means that the doctor is ruling out physiologic disease. But there are patients who are serious drama queens, if you will...patients who think everything they feel is a symptom, and for whom nothing is beyond the limits of their often vivid imaginations. The thing about doctors is, they're trained to treat symptoms they can see or measure. When there's no physical evidence of disease, yet the patient insists that he or she feels X or Y, many doctors will conclude not that the patient is fibbing or crazy, but that depression is the source of the physical symptoms the patient claims to be experiencing.

Anyway, with both doctors and patients I'm sure the old adage applies: One bad apple can spoil the whole bunch.


rex

[rdmc]

Rex,

I'm assuming from your name you're not a woman

But the medical research proves that doctor's treat women differently than men. They've done studies with
heart disease and symptoms of women being dismissed, and it's appalling what the stats are (I'll post a couple links later on.) And I imagine it happens the same with neuro complaints.

Middle aged women have even more problems. I found out after I was dismissed by the ENT I mentioned that tongue pain called BMS in middle aged women was considered a manifestation of psychoses (or so they say...they've now provem burning mouth syndrome is neuropathic not psychological)...but I am the farthest thing from a psychotic that you'll find, and anyway that guy made the judgment on his first meeting of me...wrong.

I'm the kind of patient that sits at home and dismisses my symptoms until a family member "makes" me call a doctor, or go to the ER and then it turns out I should have gone days before because I have pneumonia or a UTI with a white blood count of 23,000. I don't overreact, but before finding the right neuro I was like the princess who had to "kiss quite a few frogs before she found her prince." Once diagnosed, I've had no problems with doctors other than being seen in a timely manner (and that's just because my docs seem to be so booked up.)

Yep there are bad apples and good apples, but there are "lots" of folks on this board who have had to go through quite a few neuros before they hit on a good one. One sure sign to me if the neuro is good or not has to do with the exam. If they do the neuro exam in 5 minutes, don't even bother with them. Find another doctor immediately. If the neuro exam takes 30 minutes, they're worth listening to.

BTW, sorry for your pain situation, the pill mills have ruined the pain med Rx here in Florida.

Here's a link to some of the research on medical sexism as it relates to heart disease :
http://abclocal.go.com/kabc/story?se...lth&id=8416664

Here's a link to the video which I find fascinating because after they make note that women's symptoms are often dismissed by doctors...the male doctor being interviewed turns it back around and says that women need to be more aware of subtle symptoms and report them to their doc ...crazy.

http://abclocal.go.com/kfsn/video?id=8429398

[jsage]

When there's no physical evidence of disease, yet the patient insists that he or she feels X or Y, many doctors will conclude not that the patient is fibbing or crazy, but that depression is the source of the physical symptoms the patient claims to be experiencing.

This is a good point. It's a tough position for the patient to be in, either due to the understandable anxiety of not knowing what's happening to you or, as for kingrex, being unable to get necessary medications.

But more than that, I feel, is the problem it creates for your own self-confidence. I try to accurately inform my physician about the symptoms I feel - this is my responsibility to the physician. Yet I begin to question the reliability of my own observations. Some days I feel as if I cannot trust myself.

The first neuro I saw, on the strength of a five-minute physical exam and a clear cranial + cervical spine MRI concluded I was suffering from an emotional problem. He passed that diagnosis on to my previous PCP, who then refused to do any further testing.

I discussed this possibility with the MS specialist that I'm seeing now, and I appreciated his attitude. He said emotional problems are not off the table, but he doesn't consider them possibilities until he's exhausted all reasonable diagnostic avenues.

There may come a point in this process where I have to acknowledge there are problems driving my symptoms that are not disease-related. If so, this will be a tough pill to swallow. But that's why I'm seeing a doctor - to find out for sure.

From my own experience it's frustrating that some doctors are quick to dismiss symptoms they can't immediately explain. Yet kingrex adds valuable perspective to the situation.

And since there's no easy solution to a problem that has its roots in human nature, I think the best course is for the patient to engage in some serious self-examination, honestly discuss the matter with some who knows him well and can be objective, and then make a decision about where and with whom to continue his treatment.

have fun,
- john

[gomer]

I ly agree that men and women are treated differently!

The area of heart disease is one where men tend to be taken more seriously. My experience in other areas have been just the opposite. My fam doc REFUSED to see me for follow-up following a sore throat. couple weeks later I was hospitalized (Dx w/diabetes)!

IN the Navy I was gomer'd for a weeks and a half till one morning the doc marched me down to Xray to "prove" there was nothing wrong with me. Next thing I was taken to the main hospital via ambulance. At the base hospital I was written up for criminal violation of UCMJ for failure to seek medical treatment (pneumonia). They dropped the case after I requested my sick-bay medical records from A-school for the previous 10 days for my defense.

In the early 80s my neuro issues were blamed on my diabetes. In '87 I complained so much they sent me to the shrinks upstairs at the VA. They decided I was not nuts, not even depressed, just adamant something else was wrong. Not much was done, did have one doc who said to me "you really don't feel good, do you". She advised I use a cane and Rx'd B-12 shots, but NO ONE would really take a serious look into WHAT was actually wrong.

Fast forward 25 years, a new eye doc (not at the VA) opened the MS can of worms and the VA (the same VA) did a complete MS workup and gave me a RRMS Dx even before all the testing was done.

Men are supposed to be MEN, suck it up and move on, unless we need a meat-wagon ride to ER, at least that's been MY experience.

Gomer

[rdmc]

Uh-oh Gomer...looks like I started a "war of the sexes."

Well, after reading your post, I concede. Men and women both have symptoms written off to psychiatric issues...it's a shame.

[Shashi]

It is true that women are treated differently than men, even in this day and age, especially by male doctors. Women's complaints and symptoms are brushed off as being from our emotions or hormonal or from overreacting or anxiety or being "Drama Queens" (which I'm sure some may be.)

My husband and I were once trying to find a new general practitioner. We went to one doctor, who was great with my husband. He listened to all of his complaints, made some great observations, ordered the appropriate tests, and was very listening and caring.

Then it was my turn. My neurologist had recommended that I keep a list of my symptoms, which I did. When I handed the list to this doctor, just so he'd know what I had going on, he immediately told me that I was obsessive for keeping such a list in the first place, and then proceeded to go down the list and dismiss most of the symptoms as being caused by anxiety.

At the time I was taking Valium for dizziness and muscle spasms and Wellbuterin for mild depression, so I'm not sure how any anxiety was supposed to get through those two meds! He also said that if it was MS, it shouldn't be causing the pain I was having from muscle spasms and nerve pain. Some of the symptoms on my list he wasn't able to dismiss as anxiety, like the present Babinski reflex and hyperactive knee reflexes, the abnormal evoked potential on my left leg, etc. Needless to say, he didn't get the job as our primary care physician.

All of my doctors, including the MS specialist, neuro-ophthalmologist, and my PCP, think it's MS. None of them have ever suggested that "it's all in my head." (I've since also been diagnosed with mild optic neuritis.) But because the lesions on my MRI aren't the right shape or in the right place, I can't get a diagnosis after almost six years. And I don't care anymore. I've given up on even trying and don't want any more medical tests. I'm done. I'll live with whatever this is with the help of meds for symptom relief.

[khaarina]

I went to the hospital when I experienced my first symptoms. In retrospect, maybe it was a bit of an over reaction but I was scared to death. I thought I was having a stroke and I'm only 30! Anyway, they called it a panic attack and referred me to a life management center. Since then my primary said it was stress, my neurologist said fibromyalgia, my endocrinologist said anxiety disorder, and my cardiologist just looked at me funny and blew me off. My old primary just kept giving me antidepressants and one day finally just looked at me and said, "What do you expect me to do about it?" In 6 months of "care" she never ordered a single test. I finally fired her and never looked back. Now that I have a new primary, I have test results that prove I am not crazy. I want to take them back to the old primary and shove them in her face, but I won't. Some docs care, many don't. It's a hard thing to accept when you are sick and scared, but I've come to accept it and I've learned to move on quickly when a doc doesn't seem quite right.

[chalknpens]

Believe

Good for you, Shashi. It was suggested to me once by a close relative that I stop "just treating the symptoms" and find out what was causing them; "get to the root of the problem." I did get a diagnosis, and a treatment, and with it anxiety and depression and fear and tears ...

Have recently dropped the injections, switched neurologists, still have the diagnosis but am going without DMDs and feel remarkably better!

Now the suggestion is that I only "think" I'm feeling better, and that i need to stay on the DMDs because they will help me. They didn't help. They hastened my retirement, lessened my pension, and I know now that if I had stopped injecting two years ago, I would still be teaching.

Listen to yourself. Google Keith Kent's "The Final Analysis" poem. Or got to Amazon and buy the book: Multiple Sclerosis, an Enigma (and yes, I did write it.)

The DMDs so frequently sought by those wanting a diagnosis do nothing for the symptoms, by the way.

I think it's all in THEIR heads! My head has black holes, atrophy, and uncountable lesions, all in the "right" place for MS. But I have no relapsing/remitting symptoms.

And the frozen toes and daily migraines that caused all this? Toes stay warm because my beloved old doc told me to wear wool socks. And the headaches are gone because I've lost fifty pounds, dropped my blood pressure, and am retired. If I had only known these things five years ago, I'd still be in the classroom teaching.

[kingrex]

It is true that women are treated differently than men, even in this day and age, especially by male doctors. Women's complaints and symptoms are brushed off as being from our emotions or hormonal or from overreacting or anxiety or being "Drama Queens" (which I'm sure some may be.)

So you know, "drama queen" is used just as often to describe men as it is for women. Other, similar phrases are a"Gloomy Gus" and a "Nervous Nellie."

I've seen physicians treat women differently than men, but not where measurable symptoms were present. And if you and I both went to a neurologist and told him that our problem was that we heard the voice of a dead relative when we sneezed, he would doubtless have the same reaction to both of us.

Now, this you're not going to like. I do scads of what I know are unnecessary MRIs, nearly all of those being brain MRIs. They're ordered not because the doctor thinks the patient's headache is being caused by a tumor, but rather to put the patient's mind at ease. What percentage of those patients are women? I'd estimate 90%. The percentage of similar (negative despite insistance on having severe pain) lumbar spine exams is about the same. This is based on an entire career in diagnostic imaging. I wish I could tell you differently - and I'm not a sexist man - bit that's what I've seen.

The thing is, I don't think of those women as crazy. And I'm sure their doctors don't either. What I feel is compassion, because I don't want them to be physically sick or injured and I know that most of them are legitimately concerned that they are. And it's nice to be able to help put their minds at ease.

There are all types out there. I personally know someone who has been telling people she has MS for 10 years. I've seen her MRIs - she worked with us at the hospital in a clerical position - and she has a single lesion which never changes, high up in the brain, neither in the right location or of the appropriate conformation to be an MS plaque. I also know that she goes on the Internet and researches MS symptoms and then parrots them back to the doctors...nevertheless, she has not been diagnosed with MS. Doctors see quite a few of this sort of patient.


rex

[Shashi]

Have recently dropped the injections, switched neurologists, still have the diagnosis but am going without DMDs and feel remarkably better!

You have a point there too. Even if I were diagnosed, I probably wouldn't elect to use DMDs, just from some of the things I've heard about them. Even my neurologist said that, though he could go ahead and start me on them, they didn't work that well anyway, and he'd rather not subject me to them until he was 100% sure I had MS.

I think the whole thing about not having a diagnosis and wanting one, in my case, is just for validation anyway. It's frustrating to have such horrible symptoms and not know why.

It's also frustrating to have others ask what is wrong and not be able to tell them. I don't talk to people outside this website about my symptoms or how I'm feeling anymore, just so I don't have to try to explain things. If they notice that I'm limping, wobbly, off balanced, or looking exhausted or in pain and say anything, I just tell them I'll be fine as soon as I take my meds. And then I change the subject.

My other and main reason for wanting a diagnosis is that I had always thought that if I were ever diagnosed, I'd tell my kids what symptoms to look for, because my mom possibly had MS, and I know that my daughter has had some symptoms that worry me. Since I'm not planning on having any more medical tests, this morning I sent them an e-mail and advised them to get their Vitamin D levels checked and to start taking Vitamin D3, just to be on the safe side. I also gave them a link to the MS Society's site which lists MS symptoms, just so they'll know what to look for. It's my kids I worry about more than myself. I've learned to deal with my limitations and symptoms, but I don't want them to have to go through this nightmare.

Sorry, drgnlny, for getting off track from your question.

Hugs,

Lisa

[MarkLavelle]

I guess I'm pretty lucky, but my experience with virtually every doc I've had in the last 15 years (over a dozen, and 9 of them in just the last two yrs) has been positive.

The 'worst' was the neuromuscular doc who took me seriously, but basically said "come back when you have more symptoms!" He could have ordered a c-spine MRI, but at the time I had a new brain MRI that showed nothing...

All my other doctors have been the type to consider my symptoms a personal challenge, and have never given up or blown me off. The last 2 years I've often wondered if my purpose in life is to provide interesting work for members of the medical profession...

Happy new year,
Mark