100 differential diagnoses

[cricket52]

Found this article quite helpful. No wonder so many of us have been to see psychiatrists.

http://tinyurl.com/33ohdy

[blossom4th]

Whew! And no wonder it's so difficult for neurologists to make a definite diagnosis!!! :rolleyes: I have read posts on another MS forum where the person had atleast one normal MRI during the diagnostic evaluation. Psychiatric problems have proved to be a symptom of MS...I can see where the confusion might come into the picture. Thanks for the post!

[Abby2006]

Thanks for post, am printing off to read

Abby

[lady_express_44]

GREAT article, Cricket. The extensive list of differential dx is a keeper! How to evaluate other "time" and "space" conditions was very interesting too.

The psychiatric evaluation/process discussed in the article was very informative. No doubt some of the symptoms I've mentioned to people might come across as "unbelievable" (in my "head" :rolleyes: ), but I really don't think that most of us have had to contend with "true" psychiatric problems, at least not early in the dx process.

If the symptoms are vague, I would ignore them . . . in fact I did for many years. I really don't think I would have gotten the dx any sooner by badgering the docs, and chances are that they would have thought I was just a chip off the old block if I did (Mom = schizoprenia). I made sure I was good and paralyzed before I ever told a doctor what I was feeling. :)

Cherie

[cricket52]

Cherie:

Being older than you :D I did become a member of the "you need to see a psychiatrist" club.

In the long run it worked to my advantage. Not only did I get treatment for depression, the therapy helped me become the pragmatic, c'est la vie individual I am.

It also took a psychiatrist to encourage my PCP to look beyond the psychiatric history and recognize that the neurological symptoms were just that - neurological.

I see my PCP for prescription renewals. If I do have a neurological 'flare' I call the MS clinic first. I am very fortunate that they continue to follow me without a dx.

Having worked 20 years in the health care field I saw all kinds of patients. Often the ones who complained the most were the least likely to be sick.

Medicine remains such a mystery to people. While googling every symptom may encourage cyberchondriacs, I think it is a good way for the average person to educate themselves. There are plenty of reputable sites.

The UK is thinking of adopting a "heal yourself" program for common ailments such as arthritis, asthma, heart conditions etc. People with such chronic diseases will have access to telephone support, they will be encouraged to manage their meds and seek support when necessary.

There are pitfalls to that system. But like Canada, there are pitfalls to our system too - overuse of the Emergency room, a shortage of doctors, not enough nursing homes, etc.

If I have said it once I have said it a hundred times - medicine is not an exact science. A busy neurologist in private practice can be overwhelmed. That's why I am such a firm believe in clinics - diabetes clinics, MS clinics, heart clinics - places where patients can get comprehensive care with nurses, social workers, PT's, OT's etc. They have the time to educate the patient.

Ultimately it is up to us what we do with the information.

Of course that is generalization and certainly does not fit everyone. But if more of us took responsibility for our health care it would go a long way to relieve some of the stress from the system.

Meanwhile I think that article is enlightening. Should keep some of us limbolanders busy for a while. :)

OK - off the soapbox - next person's turn. :D

[lady_express_44]

Having worked 20 years in the health care field I saw all kinds of patients. Often the ones who complained the most were the least likely to be sick.


Who wouldn't want to think that there symptoms are caused by something "physical" rather then "mental"? There can still be considerable stigma (and personal shame) attached to a "mental illness" dx.

The reality of living with undx/untreated psychiatric illness is WAY worse then having MS. My mom never accepted the dx and lived a torchered life. She would stand in front of the mirror and swear that "1/2 of her head was blown off" . . . . not to mention a 1000 other ailments.

With proper medication and counselling, people who are treated for mental illness can often live a relatively normal life ... unlike many of us with MS. That doesn't mean those people can't get/have MS TOO, but the docs need to be able to see "the forest for the trees".

Fortunately most of us with MS realize that this disease messes with our heads, and psychiatrists are trained to assess and treat the appropriate illness causing the symptoms.

Cherie

[bluesky63]

That is a brilliant article. I love it. Thank you for posting it. :-)

Of course, now it will only add to my persistent state of denial (I am always looking for yet another reason to prove that maybe I actually do not have MS). I keep thinking I have been misdiagnosed because I have never had an enhancing lesion and because my LP is normal, even though I have probably had one of the most thorough diagnostic workups in history and my expert neuros assure me that I do in fact have MS (along with other problems).

Now I will have to look for one problem on that list that would explain *all* of my issues, which would make more sense to me than thinking I have more than one disease going on, although of course that's possible.

One of my big issues is that I think very few people really *do* get a proper diagnostic workup; there may be many people falsely diagnosed with MS who have something else entirely. The usual misdiagnosis rate quoted is 5 to 10 percent. So that would mean, for instance, that 5 to 10 percent of the people on this board who have been told they have MS have been misdiagnosed and actually have some other issue, perhaps something easily treatable.

This article was enlightening in that regard, especially about MRI readings and about what else could mimic MS in specific situations. The red flags were useful.

About psychiatric issues: Both celiac disease and porphyria are physical illnesses that can cause psychiatric problems as well as neurological symptoms. Both are MS mimics. Both have symptoms that come and go. Both can be hard to diagnose without a high degree of suspicion. I think both should be given more attention and were not discussed much in that article.

[blossom4th]

I guess I can't keep looking at all of the different diseases that mimic MS....it's kind of painful (8 yrs in limbo) and confusing.I do know that once a person starts having autoimmune problems,they become a collecter sometimes....having more than 1 autoimmune disease.On one forum that I used to visit,one of the members had MS and Sjogrens syndrome.I noted that seizures were a symptom that was differented from MS....yet newer information is coming out showing that seizures CAN be a symptom (5%) in MS.OR it may be that the person has two separate diseases.Cherie is right about the psychiatric symptoms.In MS,they are not as pronounced as in true mental illness.

[mmcc53]

Lots of people with autoimmune diseases have more than one - both my daughters do as a matter of fact.

Plus a lot of time autoimmune diseases are not limited in the way textbooks make them sound - to an exact set of symptoms with no "bleedover" into other autoimmune problems. Many times it may be very clear that there is an autoimmune issue, but it may be difficult to put it 100% under one disease name.

Look at MS - even within this "one disease" there are at least 5 varieties, and it is not always clear which one each patient has.

The "blowing off" of paitents as having psychiatric disorders because the doctors can't figure out what the problems are due to is infuriating and happens mostly to women, especially small, young women.

I never had the problem - my MS was crystal clear almost right away but one of my daughters did. She had a series of "small" things wrong and it was hard to believe that they weren't related. As things got worse and more symptoms developed, she continued to be dismissed as suffering from some psychiatric disorder. Finally her dermatologist guessed almost immediately what her problem was (at that time) and ordered a SIMPLE BLOOD TEST.

She wasn't even seeing the dermatologist about the problems she was having - it was a routine check up. Bingo -- the specialists she had been seeing could have and should have figured it out, but at least the dermatologist ( a small, young woman) didn't blow her off as nutty.

What is even more infuriating is that many docs have the attitude that there is "nothing wrong - its all in your head." Last time I looked psychiatric disorders were considered a medical problem, but clearly other doctors do not really seem to grasp that -- they act more like its a matter of "will."

To make things even worse, after her diagnosis had been confirmed by a full day workup at NIH, she started seeing a rheumatologist (the "correct" specialist for her problem.) She had a bad reaction to the drug he tried her and told her there was nothing else she could do. He acted like it was somehow her fault!!!! By this point the problems were becoming disabling, but his solution was to give up after one drug didn't work!

Fortunately my neurologist treats her now because at least when the next autoimmune diseases reared its head he took the problems seriously.:(

[fahrmar]

It is true that MS and mental illness are not mutually exclusive, each is treatable and neither curable (not true mental illness). I was regarded as a nutjob right up until last year, with the exception of 3 doctors, over a 12 year period. And yet, not one doctor offered to Rx anti-depressants (that was the most common consensus) but merely ushered me out the door. Hello! If you think it's depression, why wasn't it treated? No doubt, there came a point when I definitely had depression, even asked for meds from my (then) GYN, and he declined to Rx any meds! My neuro finally did, as soon as we met 18 months ago. And just because we're frustrated, scared and insist there really is a problem, does not make us nutjobs.

Two of the doctors who took my complaints seriously were rheumatologists, the third my neurologist. And yet, it would be 7 years (from seeing the first rheum, until my 3rd neuro) before a diagnosis was given, through a referral to another MS specialist insisted on by me.

I knew there were many mimics, but 100 blows my mind.

I'm grateful to be out of limboland, and have special empathy for those still stuck there. God love you.

[mmcc53]

...I was regarded as a nutjob right up until last year, with the exception of 3 doctors, over a 12 year period. And yet, not one doctor offered to Rx anti-depressants (that was the most common consensus) but merely ushered me out the door. Hello! If you think it's depression, why wasn't it treated?

Exactly! That is what I mean by doctors acting like its YOUR fault and could be overcome if you just tried.

And just because we're frustrated, scared and insist there really is a problem, does not make us nutjobs.

...and then they act like they are sure you are a nutjob because of the stress this kind of doctors' inaction and dismissal causes. And of course "doctor shopping" just makes it even "clearer" that you are nuts.

GRRRRRRRR.....
:mad:

[Jakaloke]

That's a great article, Cricket. I've been questioning my diagnosis lately. I guess it's some form of denial. The doctor who diagnosed me is a very respected MS specialist at the UBC MS clinic, and he didn't take long to to come to the conclusion that I have MS. That was two years ago, and I've been progressing fairly steadily since then. Fear, I suppose.

The way I understand that article is that if it walks like a duck and talks like a duck, it almost always is a duck. But on rare occasions one of these other hundred or so birds will resemble a duck enough to throw things off.

If an experienced and respected MS neurologist believes I have MS, even after I've questioned him about it, I ought to take his word for it. Especially since I can't seem to self-diagnose an alternative explanation for what's ailing me.

Scott

[lady_express_44]

That's a great article, Cricket. I've been questioning my diagnosis lately. I guess it's some form of denial. The doctor who diagnosed me is a very respected MS specialist at the UBC MS clinic, and he didn't take long to to come to the conclusion that I have MS. That was two years ago, and I've been progressing fairly steadily since then. Fear, I suppose.

The way I understand that article is that if it walks like a duck and talks like a duck, it almost always is a duck. But on rare occasions one of these other hundred or so birds will resemble a duck enough to throw things off.

If an experienced and respected MS neurologist believes I have MS, even after I've questioned him about it, I ought to take his word for it. Especially since I can't seem to self-diagnose an alternative explanation for what's ailing me.

Scott

That's who originally dx me too, Scott . . . probably a different specialist, but same place. That is one of the largest and most reputable MS Research Centers in the world, and they don't give out the dx easily.

I was still going into my doc, 14 yrs into this, suggesting "maybe what I actually have is ...X...". Finally, a few yrs ago, he :rolleyes: at me (seriously!!) and said "you've had 3 neurologists tell you the same thing now, when are you going to accept it?" He didn't want to play that game any more, I guess. :cool:

I secretly still wonder about other things, but I do know deep down that it is MS.

There is an awesome MS clinic and specialist out of Bby Hospital now, and if I were you, I would seek another opinion. I've always said that to anyone who's had only one opinion, with or without the dx, to SEEK another. You owe that to yourself.

Cherie

[blossom4th]

. And of course "doctor shopping" just makes it even "clearer" that you are nuts.

GRRRRRRRR.....
I think this is part of the "problem" that my Drs have with me.And I don't think they've appreciated the fact that I'm informed....not just dumbly sitting back and waiting for their 'golden answers'.....which were actually unsatisfactory.I've always liked being an informed person;when I was in school,I was a 'bookworm'. Yes,I do research my symptoms on the internet,but I do so on medical sites and I don't try to diagnose myself.

[Jakaloke]

That's who originally dx me too, Scott . . . probably a different specialist, but same place. That is one of the largest and most reputable MS Research Centers in the world, and they don't give out the dx easily.

I was still going into my doc, 14 yrs into this, suggesting "maybe what I actually have is ...X...". Finally, a few yrs ago, he :rolleyes: at me (seriously!!) and said "you've had 3 neurologists tell you the same thing now, when are you going to accept it?" He didn't want to play that game any more, I guess. :cool:

I secretly still wonder about other things, but I do know deep down that it is MS.

There is an awesome MS clinic and specialist out of Bby Hospital now, and if I were you, I would seek another opinion. I've always said that to anyone who's had only one opinion, with or without the dx, to SEEK another. You owe that to yourself.

Cherie

Thanks, Cherie. My doc is Dr. Hashimoto, formerly the head of the clinic (there's no rule against naming physicians, is there?). I've actually been thinking about going to the Burnaby clinic for a second opinion. It's a lot closer to me than UBC, and I can avoid the gigantic, 24 hour-a-day traffic jam known as the City of Vancouver.

Scott

[lady_express_44]

Thanks, Cherie. My doc is Dr. Hashimoto, formerly the head of the clinic (there's no rule against naming physicians, is there?). I've actually been thinking about going to the Burnaby clinic for a second opinion. It's a lot closer to me than UBC, and I can avoid the gigantic, 24 hour-a-day traffic jam known as the City of Vancouver.

Scott

Dr. Galina Vorobeychik is the lady to see there, Scott.

http://www.fraserhealth.ca/HealthInfo/MultipleSclerosisClinic/Default.htm

Cherie

[cricket52]

The way I understand that article is that if it walks like a duck and talks like a duck, it almost always is a duck. But on rare occasions one of these other hundred or so birds will resemble a duck enough to throw things off.


Ummm - Scott - if that means you are not a duck then you must be a cob! That makes me a pen.

(For those in the frozen north I am not crazy - I am talking about swans)

Those of us in limbo sometimes have ideas about what is wrong with us - deep down I think my problem is MS even though the MRI's indicate otherwise. For those with MS who think they has been misdiagnosed or have been misdiagnosed, I feel bad for you. Looking at that article and recognizing some of the alternatives I would be grateful for an MS dx in light of some of the outcomes of the others. If I were in your shoes I could well be in denial too. Bottom line is - either alternative (dx'd or not) is life-changing and it's not for the better.

And blossom - you are so right - educated patients with narrow-minded doctors make a bad mix. I may be crazy but I'm not stupid.

As for mental illness (and the stigma) it was the MS neurologist who told me that having being diagnosed bipolar was just one more symptom of MS. Neurology and psychiatry are closely related. It's unfortunate that the stigma clouds some physicians insight.

When my PCP informed me that he personally didn't think I had MS my response was that I didn't give a flying fig what it was - just fix it. (not that I am usually that disrespectful, I was sick of his lack of investigation). If there are so many mimickers then why not investigate such things as thyroid, B12 etc? His response was if the neurologists can't find the problem then how am I supposed to expect him to?

Sigh. It's a no-win situation on either side - dx'd or not. Cherie is right - the forum is where information and support is often found, especially when you are on your own without family. The MS neuro told me to find a good forum, she was a lady whose empathy and kindness was exceptional. No ego getting in her way. I miss her.

[Whisper]

Everyone is saying what a great article...how do you all read it? The printing is so small I can't read it. Is there a way to enlarge the article or do I have to go out and buy a magnifying glass??? lol

HELP.
Lorraine:)

[lady_express_44]

There is a bar with icons that pops up at the top of the written page. On the right side, of the "46%", there is a down arrow that you can click on and make the writing 100% or higher.

Cherie

[lady_express_44]

Ummm - Scott - if that means you are not a duck then you must be a cob! That makes me a pen.

(For those in the frozen north I am not crazy - I am talking about swans)

I think Scott was mostly contemplating his personal dilemma when he said what he did, Cricket. Once there is a definitive dx of MS, there is little doubt that we are sitting ducks.:cool: That's probably the reason that neurologists are SO careful about giving us a confirmed dx too . . .

I know of several people who have been dx with bipolar and MS. One girl I know is only about 23 and her first dx was bipolar (in her teens) . . . but in the last 2 - 3 yrs, they've also confirmed MS. I can't think of anything more dreadful, since taking care of ourselves is SO important and definitely not the first thing on a young bipolar lady's mind!

Early Bipolar generally manifests itself very differently from MS. From my experience, this disease is mostly "behavioral" vs. "physical" and most of the people I've known with Bipolar are very unaware or concerned about any medical/physical problems they experience. I know they have the downs (depression, confusion, etc.), but that isn't a telltale symptom of MS, i.e. a depressed person wouldn't normally be screened for MS.

I can imagine that doctors often do not take a person with a mental illness at face value though, and that must be very frustrating. The difficulty is where there is i.e. bipolar/schizophrenia, and no OBJECTIVE evidence of any other physical problems. That must very difficult for everyone involved.

Cherie

[cricket52]

Sorry Scott - I was just teasing you. ;)

Bipolar illness is often diagnosed when you are young. In me it surfaced before the physical symptoms did and looking back has probably the most difficult to deal with. Once you have been 'labelled' specialists may not see past the psychiatric history until clinical symptoms show up. Even then it can follow you around.

My daughter has been diagnosed as bipolar as well. She is now suffering from severe fatigue and with a lot of pushing from me finally got her psychiatrist to pay attention to the physical problems. He ordered a sleep study and they found out she has no REM sleep. None. She is in her early thirties and I am determined she will not have to go through the frustration I did. She will be getting an MRI this year hopefully.

Oddly enough my 'bipolar' illness has faded away over the years. I couldn't take lithium (neither can she) and once the physical symptoms were treated the psychiatric ones settled better on meds as well. I no longer need treatment.

It makes perfect sense to me that if someone is given a dx of a significant mental illness that they have an MRI or PET scan as well. I don't like being treated in little pieces, depression here, a little spasticity there, incontinence with another specialist etc.