Misdiagnosis of MS

[Matt]

I found this to be an interesting article.


http://www.docguide.com/news/content.nsf/PaperFrameSet?OpenForm&newsid=8525697700573E1885256D7200579200&topabstract=1&u=http://www.ima.org.il/imaj/ar03jul-7.pdf

[Teddy]

Hi Matt! Thanks for posting that, a very interesting article.

I found it most disturbing that of the 17 patients given the misdiagnosis of psychiatric problems, a whopping 14 were women!!! :mad: To me, that displays a distinct gender bias which would seem to be more endemic in the physician population than I'd realised.

After my undiagnosis, my current neurologist sent me toddling off to a psychiatrist to see whether anxiety or some deep repressed trauma was causing my problems :rolleyes: . The psychiatrist ordered neuropsychological testing to try and prove to me that I was depressed without realising. The testing showed organic brain damage rather than anything psychiatric. $1000 later, my neuro has decided I'm not psychiatrically ill.

Funnily enough, the psychologist who administered the test and discussed my performance told me if she were me, she definitely wouldn't rule out MS because the neuropsych results were pretty much bang on for what she'd see in MS patients.

And worst of all - after this, even though the (male) psychiatrist told me there was nothing psychiatrically wrong with me, he still saw fit to tell me "you need to have the expectation that you'll get better", among other patronising comments which are not worth my time and energy to type. Well, I've had that expectation for nearly two years now, and through two courses of IVSM - and so far all that expectation hasn't helped my walking any. I just keep getting worse...

Sorry to rant and rave, but that article really pushed my buttons!!

[*Joy*]

Hey Matt,

Interesting article. I've never had my MS symptoms attributed to "tight jeans"! I laughed at that one.

Teddy, I understand how you feel. Being a female, I've been there and done that too.

The article doesn't say how many of the doctors were male and how many were female. It would be nice to know that.

Joy

[Matthew's Mom]

matt,
Thanks so much for posting this. I must send this to the first neurologist I saw who said I was "disheveled and manipulative" :mad: And of course told it was all psychiatric.

I know that at times it is difficult to dx MS, but it took three neuro's and so many years, by the time I got my dx"s I really did need my shrink.

Pam

[gonnamakeit]

Nothing in this article surprises me after decades of seeing different physicians. Previous articles I have read indicate that about 15% of the people diagnosed with MS do not have it.

There are many educationally inept physicians trying to diagnosis diseases that are beyond their comprehension. Unfortunately MS diagnosis is in large part subjective, so mistakes will be made until better diagnostic tools are available.

If a doctor says "anxiety", I immediately assume that the person is clueless about MS and me and I never go back. I also do not believe the stats I have seen that report about 50% of all MS patients are depressed.

Jean

[Matt]

matt,
Thanks so much for posting this. I must send this to the first neurologist I saw who said I was "disheveled and manipulative" :mad: And of course told it was all psychiatric.

I know that at times it is difficult to dx MS, but it took three neuro's and so many years, by the time I got my dx"s I really did need my shrink.

Pam

I was also accused of conversion disorder early on. He said that I was remote and off-hand in my manner in his report too. I remember yelling at him, but that's what he should have expected if you decide to simply not believe symptoms that someone has had come and gone.

The theory was that after my facial paralysis, I must have made up the rest of the symptoms.

I wonder if a bunch of papers like this can convince some doctors to do things differently.

[Teddy]

I have a friend who was having neurological symptoms which were labelled as anxiety, depression etc etc. She was so desperate about this she actually checked herself into a hospital mental health unit because she felt she must be mentally ill.

She was eventually diagnosed with MS, which is now really kicking her backside, and she's had to go on Novantrone because Betaseron wasn't doing enough for her. Some anxiety. :mad:

[pals1107]

Boy can I realate to this artical. 16+ years and I still have no answers, it took 15 years to get an MRI, (yes multiple lesions). They still say I am depressed and making things up, but the other abnormal tests can't lie, am I makeing them up too? What is it, not sure but it's something.

They just don't take females as serious as males, sad but true. We are all hysterical and depressed. I had one neuro tell me when my MRI showed progression of a demyelinating brain disease ( tech's terms) that maybe I was "coming down" with arthritis, even though I have no signs of it. One say the spots are from tricylate antidepressants and birth control which I have never taken either. One say the "spots" are just spinal fluid showing up and after all I am old. (53). One say that it was from having chicken pox as a kid, but didn't know why I was getting more.

I've heard it all, and don't buy their incommpetence. It's the old HMO brush off. Stall till they give up, get better, or die.
Pat

[elle]

Thanks for sharing this article Matt- I saw a shrink during my first episode too. When they couldn't find lesions, all my symptoms were blamed on anxiety. I quit seeing her when it finally came down to which came first- the anxiety or the disability. I still believe that the anxiety was a product of the disruption caused by the disease. It makes me a bit :mad: that the majority of people they gave the mental diagnoses to were women...

I also do not believe the stats I have seen that report about 50% of all MS patients are depressed.

Well, maybe at the time of diagnosis- they ARE depressed! It's not exactly a nice diagnosis... Or maybe after 2-10 years of symptoms and doctors who are telling them that it's all in their heads, dx's that are rescinded, and having their function-abilities compromised (being in a wheel chair, not being able to dress oneself, etc)- they are just a tad depressed while sitting in that neuro's office when receiving a formal diagnosis or in the office visits leading up to it.

No one would think anything amiss if a statistic came out saying "50% of all cancer patients are depressed." MS can be just as devistating to one's life. I agree- I do not believe that 50% of all people with MS are depressed all the time. But I am sure to a doc who is giving diagnoses and treating these people when they are having bad flare-ups or new impacting symptoms that they ARE seeing a lot of depression.

[pals1107]

elle, sometimes fatiuge and pain can be mistaken for depression, but don't tell a doctor that.
There is a difference to me in being truly depressed and the depressive feeling when you aren't getting any help from the medical profession. There is clinical depression and then there is temporay situational depression. Big difference in my opinion.
I don't think they much care about our storys and finding out what we truly feel, they are on to the next patient before we even open our mouths.
Pat

[jg10]

I was given tranquilizers by my first neuro under the guise that "you could have anything from MS to a brain tumor, but if you take these for 10 days everything will go away". And big old dummy me believed him. They didn't, of course.
I even went into analysis for a year. ANd my therapist couldn't figure out why I wasn't getting better emotionally.

At the end of that year I got my dx, by a different neuro, and lo and behold my therapist said I didn't need her any more within 2 weeks of the dx.

Not knowing what was wrong had scared me to death. Once I knew I could move on.

Some of these docs need to go back to school.

jg10

[mmcc53]

Similar thing happened to my oldest daughter - her symptoms were blown off as stress, anxiety, etc. by several doctors until a DERMATOLOGIST being seen for an annual checkup ordered a simple bloodtest. Turns out she has Sjogren's syndrome, with test results which were through the roof (not remotely borderline). All any one of the those idiot doctors had to do was order a simple blood test.

After being accepted into a study at NIH and then into Johns Hopkins, she was also diagnosed with Hashimoto's. Now knowing what is wrong, correct treatment is being given and she is improving.

When we get time we are going to send every idiot doctor who blew her off a REALLY nasty letter complete with the NIH evaluation. Of course a year of her life spent being miserable is pretty important to these bigshots.

Bitter -- yes.

[Matt]

Teddy: Yeah, I have a friend like that too. He was told that it was all in his head for 20 years, then he became rapidly progressive, and they soon told him that his MS was too advanced for any of the MS treatments. The risk of infection was too high. Actually, at one point he did have some evoked potentials done and they were positive about 10 years before his diagnosis, but he FORGOT about them.

elle and Jg10: I think that being told that you made up the symptoms can cause a lot of anxiety. The symptoms too, of course, and the direct effect of the disease on the brain, probably. Jg10, that doctor who gave you the tranquilizers is a total sleazeball!

mmcc53: That pisses me off. I used to feel that I had to be really proactive to get doctors to order tests. They should order thyroid tests and whatever test for sjogren's right off the bat when people have symptoms of MS. I also used to have a doctor who would act militant whenever I asked for tests. I feel sorry for her other patients. They might have all kinds of undiagnosed conditions.

[Jakaloke]

While I was awaiting my first appointment with a neuro, and my first mri, I began what I now know was my first majaor relapse. My legs went completely numb from the knees down. I was scared to death that my arteries were all clogged up and I'd have to have my legs amputated. MS never crossed my mind.

I went to a clinic and was seen by a doctor I didn't know (a woman, coincidentally), who reassured me that the blood was flowing to my feet just fine. She sent me for some tests, and basically downplayed any concerns I had. When I asked her why my feet were so friggin cold all the time (I had never had cold feet before, so it was a real concern for me), she told me I should get up and walk around more.

I think it's a good idea for doctors to downplay their patient's concerns when they haven't figured out the problem yet. There's no sense in needlessly causing panic. It's natural for people to want to know right away what's causing their symptoms, but sometimes that's not possible, so doctors have to convey a sense of calm so the patients don't get all worked up about what may turn out to be nothing.

It's well documented that men are far less likely to seek medical attention than women for the same symptoms. That's not saying men are less prone to hypochondria than women. Maybe just that they're more likely to live in denial. But because of this, doctors probably see a lot more women who end up having nothing wrong with them than than they do men. Not trying to excuse the doctors here, just saying it might be a reason for the discrepancy.

Scott

[Matt]

I see your points Jakaloke. The problem with telling someone that you don't believe the symptoms that they have had come and gone is this. A lot of people are hoping to be told that they don't have MS or they might not have MS. The message seems to be that the only reason why they aren't being diagnosed with MS is that the doctor doesn't believe their symptoms. That doesn't help at all. If it might not be MS than the patient should know that. Saying that you won't diagnose MS because you don't believe their symptoms doesn't convey that message at all.

[keith]

Hi, new to this forum and was looking around and thought I would add my two cents. In a study done in 04 they said that 25% of African Americans and 30% of Asians that are diagnosed with MS actually have Devic's. In TM and Devic's the Il-6 levels have been blamed for actually causing depression since they are 4 fold higher than in someone without. Since Devic's has thought to have been a form of MS for so long I wonder if the levels of Il-6 could could also cause depression in MS?

[ewizabeth]

My half niece had symptoms for about 15-20 years, funny things with her eyes, fatigue, depression, other weird things, and was always told it was all in her head. I think she was given valium years ago. Anyway, in her early 40's she had an attack that affected her mobility, she was running with her husband, and fell, then her legs went weak and she had a hard time getting back to their car (they were in a park).

She was soon diagnosed then, this was about maybe 15-20 years ago. Sometime along the line, after the diagnose, she was offered Avonex, but she didn't like the way it made her feel. So, she went untreated for many years. Now, she is at an EDSS of maybe a 9.0 or 9.5, really in bad shape.

She had a very hard time of it, and I hate to think of all she has gone through over the years.

I know there weren't very effective treatments back then, but if she had known, maybe she would have taken better care of herself.

[Teddy]

Hi jg, the psychiatrist I saw tried to get me to go on Zoloft, even though he told me "it won't help you walk any better or help your symptoms". So - why was I taking it then?? Using my neurologist's reasoning that he couldn't give me disease modifying drugs because he didn't know what disease he was modifying, I politely refused Zoloft because I'm not depressed, borne out my my neuropsych testing, and have no desire to take brain chemistry-altering drugs for a problem I don't have.

My neurologist feels that is a valid point of view and is supportive of me in not taking Zoloft, however the psychiatrist still made another effort to get me to take them!! I'm certainly not against the use of antidepressants and would take them if I felt I needed them...

Matt, I'm so sorry your friend wasn't able to take disease modifying drugs in time - in his head for 20 years! That is just appalling. I have to admit, that's my one of my major worries too - here in Australia, the rule is that you have to be ambulatory to take CRABs or anything else for MS, and my EDSS score is now 6.5 and I certainly don't seem to be getting any better!

Jakaloke, I can understand your point, but in my case, to have an EDSS score of 6.5 and it be patently obvious that there is something wrong, to have a doctor try and "be calm" about my symptoms would be extremely patronising to me. I could understand this approach if the issues are not compromising daily living, but when the patients' quality of life is compromised, I think the calm approach does more harm than good. And it doesn't appear that I'm in the minority - judging from just the posts in this thread, that has been the case in a number of peoples' lives, and these people have been wrongly dismissed, to their detriment.

In my opinion, patients are more likely to panic when they don't know what's wrong because then, the possibilities are then not limited. The calm, don't panic the patient approach may have worked historically, when doctors were almost god-like and very non-communicative with their patients, but patients are becoming far more educated and there is a whole lot more information available to them. Some do use it to ill-effect to self-diagnose via the internet, I don't doubt that, but for most it's a matter of being informed and educated about their health.

I'm also not sure I agree with your comment that men are less likely to seek treatment "for the same symptoms". From what I understand (and I could be wrong!), that statistic refers more to the fact that men are less likely to seek medical attention in general, than women, not that a man would experience the same symptoms and ignore them more often than would a woman. Happy to be corrected if this isn't the case!

And - when you take into account that women need more regular consultation with the medical profession, for example, for regular pap smears (sorry guys!!), childbirth, even for contraceptive pill prescriptions! this statistic becomes, IMO, a little less significant.

There, I'll get off the soapbox now... :D

[Jakaloke]

I see your points Jakaloke. The problem with telling someone that you don't believe the symptoms that they have had come and gone is this. A lot of people are hoping to be told that they don't have MS or they might not have MS. The message seems to be that the only reason why they aren't being diagnosed with MS is that the doctor doesn't believe their symptoms. That doesn't help at all. If it might not be MS than the patient should know that. Saying that you won't diagnose MS because you don't believe their symptoms doesn't convey that message at all.

I totally agree, Matt. It's happened to me more than once, and it's frustrating as h*ll. But I'd be interested in seeing stats that show what percentage of complaints doctors deal with that turn out to be minor or very minor when the patient was sure death was imminent. I'd bet it's a pretty high number. I'm just pointing out a possible reason for all the skepticism, not excusing it.

Jakaloke, I can understand your point, but in my case, to have an EDSS score of 6.5 and it be patently obvious that there is something wrong, to have a doctor try and "be calm" about my symptoms would be extremely patronising to me. I could understand this approach if the issues are not compromising daily living, but when the patients' quality of life is compromised, I think the calm approach does more harm than good. And it doesn't appear that I'm in the minority - judging from just the posts in this thread, that has been the case in a number of peoples' lives, and these people have been wrongly dismissed, to their detriment.

Sure, but that wasn't what I was talking about. If your symptoms are visible, and your doctor still doesn't believe you, he's just being a dick.

In my opinion, patients are more likely to panic when they don't know what's wrong because then, the possibilities are then not limited. The calm, don't panic the patient approach may have worked historically, when doctors were almost god-like and very non-communicative with their patients, but patients are becoming far more educated and there is a whole lot more information available to them. Some do use it to ill-effect to self-diagnose via the internet, I don't doubt that, but for most it's a matter of being informed and educated about their health.

Nobody likes not knowing what's wrong, but when it's not clear what's wrong, a calming approach is the only logical way to go. I think many people use the internet to self diagnose. It's very easy to find a disease to match your symptoms. finding the right one takes a little more than an internet connection, though. That's why we still have medical schools.

I'm also not sure I agree with your comment that men are less likely to seek treatment "for the same symptoms". From what I understand (and I could be wrong!), that statistic refers more to the fact that men are less likely to seek medical attention in general, than women, not that a man would experience the same symptoms and ignore them more often than would a woman. Happy to be corrected if this isn't the case!

You may be right, but there seems to be a lot of concern about the issue by the medical establishment. The Commonwealth Fund (http://www.usrf.org/breakingnews/Men_out_of_touch.pdf#search=%22Out%20of%20Touch%3A %20American%20Men%20and%20the%20Health%20Care%20Sy stem%22) seems to think it's a serious problem, and according to The Medical Journal of Australia (http://www.mja.com.au/public/issues/184_02_160106/smi10282_fm.html), "In the Western world, the health of men is poorer than that of women, mortality rates are higher and men use health services less often than women, even when reproductive services have been accounted for". In my own experience, this is all true. I waited almost two years to see a doctor about weakness in my leg. I only went because my wife insisted. And I don't really know why.

Scott

[Teddy]

Scott, a couple of points I'd like to make. Yes, I am a woman, I can't help myself... :) Firstly, I wasn't making the point that my doctor doesn't believe me about my symptoms - he'd be an idiot or a malpractice case waiting to happen not to, because I can hardly walk.

On this point, you've said:

I think it's a good idea for doctors to downplay their patient's concerns when they haven't figured out the problem yet.
and
Nobody likes not knowing what's wrong, but when it's not clear what's wrong, a calming approach is the only logical way to go.

My doctor hasn't figured out the problem yet, but if he tried to downplay my concerns, or take a calming approach to me, being in the state I am currently in, let me tell you, I'd be pretty p*ssed. I think most people would be. It may be that I'm not the type of patient you're referring to in those comments, but that's my perspective on that approach.

Perhaps you're right about the rate of internet self-diagnosees; I don't really know because I'm not one of them, and everybody I know (MS patients included) tends to treat the internet as an information portal, rather than a doomsayer or match the symptom to the disease checklist. I pay my doctor over 100 bucks a visit to do the diagnosis stuff for me. Funny, I once had a resident neurologist who told me she was going to test me for sarcoidosis, and said she wouldn't explain what that was "because she was sure I'd just go home and look it up on the internet".

You may be right, but there seems to be a lot of concern about the issue by the medical establishment. The Commonwealth Fund seems to think it's a serious problem, and according to The Medical Journal of Australia, "In the Western world, the health of men is poorer than that of women, mortality rates are higher and men use health services less often than women, even when reproductive services have been accounted for". In my own experience, this is all true. I waited almost two years to see a doctor about weakness in my leg. I only went because my wife insisted. And I don't really know why.

Quite right, and being Australian I am well aware of my government's concerns at men seeking less medical advice than women, and their campaigns to encourage men to have regular health checks. My comment was that I believe that this statistic applied to men's health in general, and your original post said "It's well documented that men are far less likely to seek medical attention than women for the same symptoms." My original post disagreed with that particular point, I didn't disagree with the fact that men are less inclined to visit their doctor. I still disagree with your "same symptoms" comment.

Lastly, I went through ten years of numbness which I ignored, I had optic neuritis while pregnant which I never followed up on because of course it resolved, and about six years of leg weakness, which, while subtle, has still complicated my lifestyle considerably and has progressed to where I am today. I decided to go to the neurologist only after it became clear that my ability to continue in my career was in jeopardy due to these health issues (I no longer work). I went to my first neurologist two years ago. It seems I'm more masculine in my approach to health... OK, OK, I'll shut up now, I promise!! :D

[Matt]

OK, so I did diagnose myself with MS on the internet. That was something like 6 years ago. It's because I had had a number of symptoms come and go, and a neurologist who told me that he wouldn't diagnose me with MS because he didn't believe my symptoms. There was no mistaking my symptoms. So, it sounded like a diagnosis of MS.

I would never recommend to anyone diagnosing themselves with MS on the internet. It turned out that I was right, but many people would be wrong if they diagnosed themselves with MS on the internet. It probably does happen far too often these days.