Is it just me, or is it the rest of the herd?

[Salamander2]

I have sat thinking about this dang consultation letter from my Neuro.  My next Neuro eval will be different.  I've decided that the next time I list my symptoms, I will ask whatever Neuro I am seeing "do healthy people experience this"?  It's a valid question.  For example,  it is normal to trip or fall everyday?  Does everyone do this?  How about the vibration, tingling and numbness, is this normal?  Does everyone do this?   I suspect the answer is no.  AND as the answer is no,  then STOP TELLING ME NOTHING IS WRONG.  Stop making me feel like I have nothing of significance.  Tell me everything that  could be causing these symptoms.  Because saying someone who is symptomatic is "Neurologically stable" is an unexceptable answer.

So there!

Sally

[Quixotic1]

You are so correct.  It is more than condescending to be told that nothing is wrong.  All doctors do see people who have misidentified normal sensations and normal happenings as signs of serious illness.  But, too many docs begin to dismiss all things as being normal or all in your mind.

I think your approach is a good one.  Jules makes a good point also.  Sometimes people come in with so many problems that you cannot even get through the history before the appointment is over.  I also have had to ask a parent to limit the problems we deal with to just one or two.  BUT, that is not necessarily appropriate to the problems of someone with symptoms which may be MS.  The answer is not in just considering numbness this time and the vision problems the next.  It lies in seeing all of the symptoms and seeing that they form a greater answer that encompasses all or most of them.

I see that in this situation with the cataplexy, this worked.  But, if all symptoms are just considered in isolation, no one with MS would ever be diagnosed.  The bladder problems in MS will often look just like "Overactive Bladder."  It is still possible that the Cataplexy is part of a larger overall problem.  These can be seen in MS.  So, Jules, I hope as you deal with one problem after the next that you and he periodically ask, "Is this problem related to the others that I have?  Is there anything that would cause all of these?"

There is a book by Jerome Groopman, M.D.,the author of the New York Times bestseller How Doctors Think (Mariner Books, 2008).  He offer these questions which you can adapt to fit the situation:

1. “What else could it be?”
This question helps to prevent the kind of error, where a diagnosis is formulated too quickly in the physician’s mind because it corresponds to the initial symptom or abnormality or because it is most familiar to the doctor.

2. “Could two things be going on to explain my symptoms?”
In medical school doctors are taught to be stingy in their thinking, meaning they are taught to identify a single cause to explain a variety of complaints and symptoms. But sometimes a patient can have two medical problems simultaneously.  Physicians sometimes stop searching once they find an initial problem, even if the patient does not fully recover.

3. “Is there anything in my history, physical examination, laboratory findings, or other tests that seems not to fit with your working diagnosis?”
All physicians tend to discount information that seems to contradict their hypothesis. This bias can lead a doctor down the wrong path; his or her diagnosis may be so firmly fixed that this leads to ignoring contradictory data.  We have all seen the doctor that has a diagnosis or non-dagnosis so firmly entrenched that they reject important things.

So these are other ways to keep your doctor honest and open-minded.

Quix

[JulesL5S1]

I agree.  

And now I have the opposite situation.  I was just diagnosed with cataplexy and thought that what I was experiencing was normal.  i.e. when I sneeze my legs buckle, same when I cough, or when I am startled.  So after this dx last week, I spent the next several days asking everyone I knew if they had the same problem.  No one else does!  Yet for me it was just common, I thought everyone in the world had a body that worked that way.  Who knew?!

That neuro visit did teach me that even though I have a very long time time with many events, I should just pick one symptom and focus on that until I have an answer.  Hence, my fatigue issue is now resolved (i.e. dx with narcoplepsy and cataplexy).  I haven't decided which symptom to raise next!  My arms not working or my legs not working or the bladder issues?  But I will choose just ONE.    It worked for him and he made an accurate dx!

[Fluffysmom]

My 3rd neuro wrote in my chart notes that I "need no further neurological workup".  This is while I was experiencing tremors, fatigue,dizziness, balance issues, sometimes blurry or jittery vision, etc.  I had a brain MRI with many many small lesions, and some irregularities on neurological exams, as well as a possible lesion on my thoracic spine.

I had a normal lumbar puncture, my lesions weren't textbook for MS, so she just quit.  She had done some bloodwork, which ruled out a lot of the mimics.  Instead of looking for an answer, she just dimissed everything.  She even said that she suspected somatization, which I understand to mean that she thought I was having symptoms because of stress, or maybe for the attention.

Thankfully, my current neuro, whose an MS specialist, responded to my asking questions and didn't give up on me.  She was at first ready to send me on my way, but I kept asking questions, and she sent me for some more tests, and set up a follow-up visit.

You read my post about seeing her yesterday, and how excited I was because she finally really saw me as a patient with neurological issues, and it made all the difference.

So think up those questions, and be prepared to ask them, politely but firmly.  We have to be our own advocates.

Wishing you the best of luck and health,

Kathy

[Deej70]

I'm with you!

I actually asked my neurologist this to an extent.  I said "so what is it then?" and he shrugged and said it's the bane of his existence.  Don't you love it?

[OperaMBA]

I have made up a comprehensive list of all that has happened to me.

I read it to him (N3) and he suggested that my medicines could be causing the problems.   I asked him what were odds that ALL of my medicines, decided to exhibit ALL of the potential side effects, ALL beginning on the same day.   He stammered something about my body possibly being predisposed to this kind of problem.   I told him that was BS and that I would be more likely statistically to win the lottery.

It's almost like playing that game we all played as children where you pull the string and the toy spins around and declares " the chicken says ****-a-doodle doo!

Except in the adult version all they can utter is doo doo!

Richard
OperaMBA

[Heather3418]

I so much agree with you.  The abnormailities are there for the doctors to see, but yet they cannot give us any answers, as to why?  I think asking the doctor those questions you posted, will envoke a response from him, for sure.

It's got to be obvious that you are NOT "Neurologically stable," if you are still having all these problems.  Would you please keep us posted?

I want to hear the doctor's answers....

I'm thinking of you and keeping my fingers crossed..

Big Hugs,
Heather

[vizslagal]

Amen Sista!

Yvette