I have been bothered by the article that SOONERMOM posted yesterday. It annoyed me far beyond what I would expect for the usual poorly substantiated "so-called" scientific writing. And, LOL, it was NOT just because I disagreed with it. I believe the reason is that it was promoting an agenda under the guise of being a review article. Now, all of your who responded to that post were angered and insulted by its message and tone, but I don't know if you all saw how deceiving it really was. And how the thinking that pervaded that article is harmful to patients and to doctors who read it, but may not see through it.
Here is the article, though I hate to give it space and credence by even discussing it:
First off the article states it is a review of the Differential Diagnosis of MS. A differential diagnosis (also referred to as a DDx) is all of the possible diagnoses that reasonable fit with a patient's complaints and their physical exam. As testing is done the DDx will narrow down the choices and sometimes add new ones. Through a combination of eliminating some diagnoses and adding evidence to others a doctor will attempt to arrive at the right answer.
Though this article has pages and pages of tables listing every conceivable diagnosis which causes MRI lesions, that is not what it discusses. The text is only a few pages long. It glosses over most of the information on the DDx of multiple sclerosis and gets right to its real point. If the patient doesn't have "average" or classic symptoms of MS, then they FAR more likely have a psychiatric disorder. The article is not about the wide range of mimicking diseases, it is about convincing the reader to be ready to label the patient early as a psychiatric problem if the diagnosis is not easly found.
SOONERMOM asks if this is part of the problem. Yes, it most definitely is. Many of the neuros that the people on this forum have seen have dismissed our complaints outright, some with a work-up and some without. The most common thing we have heard is that we have our problems because we are stressed, anxious, depressed or bored and need another focus to our lives. This article was written by two of those neuros. Other neuros, who don't understand the variability of MS, or understand that it can present atypically, will read this article and be swayed that they are justified in leaping to a psychiatric brush-off.
This article notes red flags to alert that physician to consider a psych problem early. They state that "RARE" patients with a red flag may have MS. I find this absurd. The red flags are very interesting.
1) Normal neuro exam. I beg to differ. We have seen and read of multiple people who presented with a small sensory problem (like tingling of the face) and yet had classic MS. A significant problem with this is that many (read that MANY) neuros do a woefully inadequate neurologic exam. How many of you have been surprised to hear what a real neuro exam was like? Thus, many subtle signs of problems will be missed. People with Optic Neuritis have been dismissed by the ophthalmologist as normal because their lesions were two far back on the optic nerve to be seen by exam (as are 50% of cases).
2) Abnormality in a single location - that is exactly the point of identifying the CIS - Clinically Isolated Syndrome. Ms starts often in just one location. I had just one location initially. My right leg wouldn't lift. I was told summarily that I didn't have MS.
3) Progressive from onset - Uhhhh....... 15% of people with MS have a progressive form. Do these doctors understand that this is about 1 in 7???? Did they skip math? Yes, this requires additional thought and often additional observation.
4) Onset in Childhood or over age 50. Okay, righteous indignation is appropriate here!!! Onset under age 12 or so is truly rare, but they are also a population unlikely to have a psychiatric cause. And over age 50 is less common, but RARE?? How many of us are there here on this board?? All current studies are pointing to thinking more about MS in the older population. The upper age limit was abandoned over 20 years ago and WITH GOOD REASON! MS has been diagnosed well into the 70's!!
5) Psychiatric disease present. Oh my, dear! In the text they include a history of anxiety and depression. What? Patients with mood disorders don't get neurologic disease?? They somehow already have their disease?? Depression is a primary product of MS and a major depressive episode is being increasingly identified as an initial MS presenting attack or relapse!! And, why does no one acknowlege that the suffering of neurologic symptoms arouses a huge amount of anxiety in the normal person? The average anxious person does not have persistent sensory deficits, motor deficits or vertigo, to name a few. Only a "rare" person with a history of major depression or anxiety will get MS??? That is truly laughable.
6) Signs of systemic disease elsewhere in the body. Okay, I agree with this one, but with the caveat that even people with another disease have been found to have MS.
7) Prominent Family History - There are some cases where MS has been diagnosed in a large number of immediate family members. This would be statistically improbable, but not impossible. It would be wise to review the other diagnosed members. If they were clearly MS, then it is what it is. If everybody is atypical, then a search for another genetic disease makes sense.
8) Gray matter symptoms like alterations in mental status, loss of speech, seizures. Well, this should prompt very careful inquiry into the other diseases which can present with these, but confirmed MS has been seen with all of these presentations.
9) Peripheral symptoms - like a neuropathy. Yes, the workup should be more extensive to separate coexisting neuropathies from MS symptoms, but only a RARE person with a peripheral neuropathy will have MS??? Anyone here wish to comment on this? Anyone with back pathology AND MS??
10) Acute hemiparesis (one-sided weakness) It has been described, but would be rare.
11) Lack of "typical" symptoms. Oh my!! Hold me down here! They list ON, L'Hermittes, bladder problems, and a "sensory level" and then say "etcetera." If you are asking doctors to be suspicious, then list the signs that they don't have to be suspicious of. What a huge cop-out! There are dozens of common presenting symptoms!! - which I bet these authors routinely ignore. A note here: having an identifiable sensory level is NOT, I repeat NOT, typical of MS. The problem with MS is that the nerve attacks are hit and miss and give rise to sensory complaints that do NOT fit within a definable sensory level. They are just plain wrong here.
12) Prolonged benign course - uhh....well described in the literature of MS.
1) Normal or atypical MRI. The numbers of people with MS and no MRI lesions are much fewer, but even the sources that are quoted as proving this show that from 2% to 9% will have a normal MRI at presentation. I can show you these studies. And Atypical. Only a RARE patient will have an atypical MRI. Beings that they don't define atypical, this statement should just be IGNORED!
2) Normal CSF - There are no studies showing that close to 100% of people at diagnosis have poitive CSF findings. The CSF is not even in the diagnostic Guidlelines (the Criteria) as a "make or break" factor in the diagnosis. The CSF is most likely to be normal (if it is going to be) at the diagnositic stage - early in the disease. Also, many sources report that the CSF in PPMS is negative up to 40% of the time.
The article challenges that MS is a clinical diagnosis. This means that the diagnosis "can" be made on the patients history and physical alone if the information there is sufficient. They state that this is not true because all patients get an MRI in developed countries. Well, yes. An MRI would be ordered as a baseline, to provide more evidence and because it is considered the standard of care. They are suggesting that a negative MRI would negate a clinical diagnosis. The trouble with this is that it, unfortunately, will for many neurologists. But, there are also many who have the intelligence and the confidence to stay with their clinical diagnosis despite a negative MRI.
Finally, I believe that neurologists with a narrow-minded and rigid mindset as the authors of this article have will create a "self-fulfilling prophecy" by approaching the diagnosis of MS this way. They immediately reject the diagnosis if anything is atypical or raises one of their many red flags. I'm sure they are quick to dismiss any case that isn't obvious as psychiatric. Those people are sent away, as many of us have been, with direct or indirect accusations that the fault is our own. Those people do not return and seek their answers elsewhere. The only people then, who they see in their clinic are, of course, "Classic cases of MS." So that's all they see. So their belief is "true."
One of our members a short while ago, had a good clinical basis for a Dx of MS, a positive MRI, but only one O-Band in his CSF (making it negative). His neurologist told him it was not MS and that he had never seen MS with fewer than 2 O-Bands. Well..., if he nevered diagnosed it with fewer, he wouldn't see patients with fewer, so he was proved right. Circular and stupid thinking.
Beware of people that try to foist off a pet theory under the guise of an informative article. And be very suspicious of people who try to deflect the difficulty of diagnosing something back onto the patient.
Wow! as I am preparing to see a neurologist for the first time next Monday, I certainly hope mine does not fall into this mind set. I've recently been diagnosed with a form of dysautonomia, inappropriate sinus tachycardia. The comments you've made are much the same as ones you will read on their discussion boards. They bemoan the fact that they are often written off as nuts cases or hypochondriacs. I was lucky enough to be referred to a cardiologist that recognized my condition without chalking it up to anxiety. I recently read the book, "When you're sick and don't know why" by Linda Hanner. The author was finally diagnosed with Lyme disease after years of frustration by being told that they didn't find anything on the lab tests so nothing was wrong with her. She said that she started asking for her medical records to be sent directly to her, rather than to the specialist that she was being referred to. She found many errors and notations that she might need a referral for psych eval. She said it was very hurtful to read these comments when she knew something was physically wrong with her. I'm sure reading this is your medical records could easily start you off on the wrong foot with the next doctor.
Even though I'm the medical professional in my family, I am taking my husband with me to on the visit to the neurologist. Doctors, in my experience, are less likely to be insensitive with you when a witness is in the room, and especially if that witness is a man!
I've just joined this group and appreciate getting such an educated review of an article that may affect my future treatment. Thanks, Kay
I think we'd be much better off if more neurologists took the scientific approach to diagnosing their patients. Instead of trying to come up with reasons why this or that is happening, they should look at the evidence on hand. What are the symptoms? What does the patient say? Treat the symptoms, even if you can't figure out what's wrong.
Don't tell the patient it's all in their head, because the scariest thing in the world is to have all these symptoms (especially cognitive ones!) and have the doctor tell you that there's nothing wrong with you. Before long the patient starts believing they're crazy, because they feel awful and the doctor is telling them they should feel great.
I know that somatization and conversion disorder really does exist. But there's a lot of people out there right now that think they're crazy, that are really just undiagnosed.
Have you considered streamlining this and sending it as a letter to the editor of the journal? I think the most egregious missteps in this paper are their statements about "progression" being a "red flag"--funny how 1 in 7 people is considered a high rate among women in terms of breast cancer, but is "rare" among people with MS with PPMS--and the second is the overall complete vagueness of the paper...from no definition of "atypical" to assertions about psychiatric disorders with little information about their nature. I would say that I'm surprised the the neuro reviewers let this one get by--it's so useless from a clinician point-of-view and so offensive from any other point-of-view--but I know how reviewers are, so I'm not surprised. It's a completely worthless bit of drivel, in my opinion, and I would not find it even remotely helpful in the clinical or research setting. Their laundry lists of alleged "Ddx" are useless, disorganized, uninformative.
Really, that paper irritates me from all perspectives: scientist, researcher, regular person, patient. They ought to be embarrassed to have their names on that ****.
They love to point it back at the patient. I have never been so mad as when he said "It may be cronic (chronic) depression." Oh thats why I lost my vision?? Not to mention the other symtoms (symptoms).................Bull****!!!!
I am learning fast we have to stand up for ourselves! We know if there is something wrong with our bodies................
I am starting my letter to the three neuros that dismissed me and I am including your info in it. This is wonderful and makes so much more sense to me than any of the 3 neuros explanations of "why I don't have MS!!!".
I still do not know that I do and am actually thinking it is going to end up being a mimic at this point BUT each of the three neuros I saw so far gave a lame excuse and then took the mindset of "hypervigilance" on my part or "depression and anxiety". I wonder if they were the idiots that wrote this article.
I really wish we could encourage the MS Society to have each and every neuro that it certifies as an MS Specialist take an online course from Quix in Diagnosing MS. Maybe we can petition them for this and she could get paid $500+ per neuro that way we win all the way around. Just a thought, how bout it guys?!!
Thanks to everyone who was entertained by my ire. I really did get my dander up.
I wouldn't have the first clue about how to identify lesions that are suggestive of MS, guys. But, I would love to have a crack at some of these so-called neurologists. The trouble is that I no longer have my professional composure. When I get frustrated I cry, and then they would just say that I am depressed. But, I like the $500 a crack idea. Or was it $500 per crackpot??
Interestingly enough, I qualified for 5 of their red flags. If each one makes it RARE that a person would have MS, then how likely is it that a person with a "RARE x 5" chance would actually have MS?
Emily are you our statistician? Doesn't "RARE times five" mean I couldn't have MS at all? I wouldn't try to refute this because it is too old and has been seen by too many people. And I don't even have enough energy to do what I want to do as it is. I'm annoyed I used up so much on this worthless piece of sh*t. But, it gnawed at me all night. What drivel. I looked at the site. It isn't clear that this rag has mandatory peer review. They don't say.
Also, I skipped over another half dozen major (MAJOR) half-truths, inconsistencies and false statements. Sheesh!!
Yeah, my spasticity was considered just a ploy to obtain medical testing, being a Munchausen, you know.... I should have gone for something easier to fake.
I'm pretty sure that the last 2 neuro's that I saw have read this article. I guess that is why it went all over me when I read it! I totally felt like I had crawled into their heads!
I guess I am glad I didn't completely cut ties w/Neuro #1 because he is at least more concerned with my symptoms than he is an "atypical" abnormal MRI being a red flag. (Definitely not calling him perfect--LOL!)
Just because I don't present like someone who has had diagnosed MS for many years, isn't a reason to diagnose me something that I obviously don't have (hemiplegic migraine) and ignore all my symptoms that don't fit that diagnosis. I mean, I do have 13 lesions in my brain that were caused by SOMETHING??? Okay, so they aren't typical for either MS or migraine....let's think a little more doctor before you just send me on my way w/o any talk about another MRI or any other testing.
I guess that is what irritated me the most about that article was that it encouraged neuro's to just dismiss any follow up for MS, when we know that early treatment is ESSENTIAL!!! (I know it didn't say that word for word, but that is what I got from it personally) I also felt like it encouraged these doctors to take the LAZY & EASY approach to a very complicated diagnosis like MS. "You are crazy, now go away" "You have migraines, now go away" etc.....
Kristin, that is a great idea! I am sure that they could a learn a great deal from Quix!
It should be Mandatory!!
Someone give Santana a megaphone!!! We hear you and will stand with you while you broadcast this message to the farthest reaches!!
I wish anything we could take those nightmares from you! I was traumatized by being accused by a colleague of creating symptoms to obtain medical care. That was nothing compared to your treatment. I hope you can heal from it.
I made the same point you are making in my rant above. The existence of a mood disorder or a more profound pyschiatric problem should not place a person into second rate - or criminal - medical care.
I LOVE THS FORUM!!! Man did that get my Irish Up! Remember my first neuro told me that the magic number for MS is 9 lesions AND if I just breathe in and out ALL my symptoms will Go AWAY!!!!! She NEVER ran any tests on me but dont ya know I have the "anxiety/panic gene". This woman didn't know me from a hole in the wall and came up with that great DX. Just had to vent! Thanks for the great article, you're worth at least 500 a crackpot!!!!
A newbie here and just reading some of your posts. I think I need you badly!!!!
My new husband (married a year) is 57 and seems to be getting worse quickly. Back some 22 years ago, he was tested and found to be hearing quicker on one side than the other and was given a diagnosis of probable MS...which he promptly ignored and forgot.
I noticed a leg drop which turned up only when he got tired or hot. I also noticed that he would become irritated and irrational again, when he was tired or hot and then have no memory of being so or what he had said. I also noticed that he wasn't thinking as well and forgetting more.Sex trouble too of course. I did a search and sure enough it turned up MS.
It all culminated one night when he had a co-worker over and tripped, fell, dropped things and broke things. I could see the man thought my husband was drunk and that convinced him it was time to sort things out. Primary care doc ordered an MRI and then sent us to the worse pig headed ego maniac nurologist alive. Husband doesn't communicate things very logically these days and when he mentioned MS the nurologist shot him down and efectively ended listening to much else. The supposed physical nuroglogic test he did in the offece was "completely normal." He decided husband was exhausted at work because he had sleep apnea. I assured him that he didn't. Sleep study was ordered and he was going to send us out when I asked if he had even looked at the MRI? ahhh...nope.
That was enough for me but husband liked him and wanted to give him a chance. Fine...second visit he saw the MRI and there were 3 or 4 lesions but that was surely due to husband having been a smoker in the past. Again, he was dismissive and wanted a sleep study and I said would apnea or narcolepsy cause foot drop? No...but hey, it is cool in the waiting room and sitting for a long while and neurologist had never seen foot drop. I assured him it wouldn't be difficult to induce it and he asked me to video tape it....and then made some noice about sending him off to the teaching hospital if we didn't agree with his speculation of sleep trouble. I said can't we do a spinal tap? Yeah, sure, we can do one I guess.
Called into the office again after the spinal tap and wow...there are og-bands but not just in the CFS...in the serum, too. I ask how many...multiple...I ask if they are mirrored in the serum or different...uhmm don't know. But hey...uhmm let's say probable MS now and go get that sleep study and go off to that hospital for more testing. I said can't we get a second opinion? No....NO???? I can't wait to be rid of this guy.
So yesterday, it just so happened that husband had an appointment with dermotologist for a growth that had been biopsied a while back and it came back as a lupus skin growth. Great.
And that stupid sleep study was last night. It came back perfect except for restless "leg" syndrome...the right leg that drags shook all night.
Here is the problem...we need a definite diagnosis. Husband is an engineer for a nuclear power plant and it is affecting his work to the point that it has been suggested that he can't do his job. He needs flex time at the very least and at the worst we need to get him out and on SS. No one knows what the probable diagnosis is...and he doesn't want to chance telling them until he can get what he needs. We have a possible two month wait to get into the hospital with the hope that someone will give him a definite diagnosis. Any help or ideas? He has been working there 22 years.
Hi and welcome. I think you'll like the helpful and knowledgeable folks here.
I ask that you copy your post into a new thread of its own on the first page. That way many more people will read it and you will get more responses.
For me, I think you absolutely need a consult with an MS specialist. If you don't have faith in the neuro your husband is now seeing then nothing else will work either. He needs rule-out blood work, a definitive physical exam and maybe Evoked Potential testing. I don't quite understand the results of the LP. To the best of my knowledge, abnormailities should be isolated in the spinal fluid only for MS to be more likely.
I am new to the board but not to MS.
I was YOUNG and HEALTHY looking when I went to doctors to find out why I was soooooo tired. Like narcolepsy tired, driving to work in the morning tired, 11:00 am tired, 1:00 pm tired, and driving home tired. I cannot count the times I could not remember driving over the St. Johns river on the way to and from work. I have been LUCKY.
I was told I was depressed, or it was because I smoked (which I have been free of for 7 years), because I had two young children so close in age "that i was chasing", or that it was all in my head.
The thing of it was..after 3 years of trying to find out what was wrong with me, going to 4 different doctors, it took me cracking my left tibia over training for a 1/2 marathon to figure out what was wrong.
Believe it or not the Physical Medicine Doctor (better than a podiatrist (foot / leg doctor ?, not exactally a sports doctor) got to the bottom of my problem.
On my last visit for my still healing leg I asked him if a certain symptom I had started having meant that I had a pinched nerve. The good old L'Hermittes shocks down my back to either of my feet.
I was immediately sent next door (really) for an MRI on my neck. No waiting time. 2 days later I went back for the results and he said there was an abnormality in my neck mri and that I could get another MRI in 6 months to see if it was still there, if so then get one with contrast, Or (as he wished) get another one "Right Now" with contrast. Again I was sent next door immediately. 2 days later he lets me know that there is a demylinating lesion in my neck and that he wanted me to go to a neurologist.
He was very caring and said " I know what it is, but since I am not the specialist in neurology I want you to get a diagnosis from one, but do research until then on demylinating lesions".
I researched and found the most fantastic neuro on earth. I was in in 2 weeks for my 1st eval, he said 98 % chance MS, the next day HE did my spinal, the next day I had a script for Betaseron. He never never rushes me through my appointments. Since my Favorite Sports Doctor actually listened to me I have been well taken care of.
It just takes finding the right ones. I happened to just "break a leg".
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