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Spitting mad at neuro regarding MS

I was diagnosed with MS in the hospital Christmas Eve (2013). This was after I lost use of my left side 4 days earlier. I had also had 2 documented cases of optic neuritits in the prior 16 months and a list of chronic symtoms including tingling, decreased sensation and spasticity. I had brain and spine MRI that were negative but the doc said that MS is primarily a clinical diagnosis and the neg MRI could mean the disease is in an early stage or that the lesions are too small to be seen or that they are in a part of the brain that does not image well. While in the hospital I was given a steroid pulse over 5 days and got significant relief.  It took about 3 more weeks to get mostly back to normal. 6 weeks after being discharged and learning to come to grips with the diagnosis I finally got to see the MS specialist - the guy who was supposed to finally get me relief or even a little reprieve from some symptoms. But no - he blew me off completely. He took very little history, did not look at the time line that I created of symptoms and apparent flares, did not even do a thorough neuro exam. All he did was tell me he had seen my MRIs, ask about the "incident" in December, check my reflexes and have me follow his fingers with my eyes. After that he proclaimed me healthy. I asked about the continued symptoms and was told that he had no idea. Perhaps I should see a rheumatologist, he said (but would not give me referral). He does not wish to look into further testing (LP, VEP) and does not want to follow up in the future. He pretty much said "you're fine, have a nice life"

I am not wanting to have MS but I have already tested negative for Lyme, ESBV, HIV, had a negative ANA, negative for stroke/TIA. Still the symptoms live on and are actually getting worse.

So, am I wrong in thinking this guy is a poor excuse for a neurologist and that I need to see someone else? Am I wrong about questioning the validity of "Negative MRI = no MS"? How does one go about getting a second opinion without looking like a hypochondriac?
6 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome to our little MS community,

You ask.....

1)So, am I wrong in thinking this guy is a poor excuse for a neurologist and that I need to see someone else?

A) Absolutely a poor excuse and you need to get a second or even third opinion!

2) Am I wrong about questioning the validity of "Negative MRI = no MS"?

A) Not wrong at all, because its totally understandable to have a trillion questions when it comes to MS. Your dxing dr is actually correct, MS is primarily a clinical diagnosis, and the MRI's, LP, EVP etc test results either lead towards the more likely dx or away, there just isn't a single test that accurately dx's MS. We actually have a health page on normal MRI's, that could help explain the hows and whys. If you'd like to read our health pages, they are found at he very bottom of the page.  

3) How does one go about getting a second opinion without looking like a hypochondriac?

A) Unfortunately second opinions can be a bit of a hit and miss, it's not uncommon though for pwMS to have had quite a few neuro's, either before or after being diagnosed (dx) and it is always advisable to get second or third opinions when it comes to conditions like MS. I've never understood why it's quite common for MSers, even those dx for years and on a DMD, when they've changed their neuro for what ever reason, that they can find them selves going though the dx process all over again, i can't work out why but there must be a point to it that i've missed.

I think you've possibly got two ways of looking at this 1) you've already been diagnosed, based on 'your medical and clinical history' and your actually looking for a neuro who specialises in MS so you can start appropriate treatment. or 2) your looking to have the dx of MS confirmed and if it is, then you can start treatment and if it's not MS then get the correct dx etc.

Regardless of why you get a second opinion, MS is high on your 'probable list' so get hypochondria out of your mind, because it's a totally different set of circumstances, when you've already been dx with MS, and you have clinical and a medical history that puts MS on your list...........MS is your pink elephant in the room and shouldn't be dismissed with out good reason, 1 MRI doesn't wipe out all the other evidence that put MS on your list in the first place.

I would consider contacting your local MS society and getting a list of their recommended MS neuro's, word of mouth is always a great way to find a good neuro that other MSers see and trust, we may have a few community members that can help you find one close to you.

Cheers............JJ

ps again welcome to our community
Avatar universal
Hi. I have little to add to JJ's response, as she's covered the ground very thorougly. So just one comment--the doctor who did give you the diagnosis is very likely right, but he is a brave soul in this day and age. Very few neuros, no matter what lofty institution they work at, will diagnose without strong MRI evidence. If you can retain this doc for treatment, by all means do so.

The new doc, supposedly an MS specialist, is not someone you'd want for treatment anyway, because he's lazy. The clinical examination he did was grossly inadequate. So yes, you probably are starting on the road that so many of us here have been on. It can be frustrating to say the least, and you may have to wait for more evidence from testing.

I see that you're in Gettysburg, which is not too far from Hopkins. I suggest you assemble all your test reports, etc., and try to be seen there for another opinion. If the original doctor can't treat you, perhaps he will cooperate in dealing with other medical sites. No guarantees that you will get a better result at Hopkins, but I think it's worth a try.

ess

667078 tn?1316000935
If you reach a dead end with a Neurologist get a second opinion. Make sure it is a MS Specialist. My first Neurologist said I had MS but he left town for another job. He sent me to a Neurologist who said it was not MS, she fired me when I questioned her. I went to a new Neurologist a MS Specialist. he followed me for over a year before he would diagnose me with MS with abnormal MRIs. For him it took an abnormal Lumbar Puncture.

Alex
Avatar universal
Thank you.  Again, thank you. I have spent a good deal of time in the past few days crying and feeling frustrated and wondering if, maybe, I am nuts. I have a history of depression and wondered if perhaps I was just relapsing into that. I truly don't feel that is true but the doc on Wednesday made me feel that way.
A little additional info - I just spent time on my "Wellness Page". It's a website that allows me access to all of my health record, provided that health care is obtained within the health organization that sponsors the page. The brain MRI was done on a T1.5 machine without any contrast. I know from research that it was done all wrong for detecting MS lesions. Today I am even more irritated at the so-called MS specialist who was willing to dismiss a diagnosis with poorly done testing but I am also feeling empowered to look for a real MS specialist who will either treat me or confidently prove that I don't have MS. I truly think that I do have it, but would love for some to prove me wrong.
Thanks again for the encouragement. I really need it right now.
667078 tn?1316000935
I was sure I did not have MS. I had several doctors say I would be diagnosed with MS some day. I thought I either have it or I don't. What is with this someday you will be diagnosed. I was truly shocked when they did finally diagnose me with MS.

Alex
Avatar universal
Before I say anything about MS, some things come to me-  One is Lyme disease.  Most testing that is done in a doctor's office is very unreliable.  It often takes a Lime Literate doctor.  Some of the best info you can find on it is on Face Book.  It is far more common than regular doctors often admit and many don't believe in chronic Lyme.  Neuro Lyme  is much like MS, many say they are one and the same.  I could write a book on all that Lyme can do.  I wouldn't rule it out.  
The second thing is this- Has Transverse Myelitis been brought up? This looks a lot like MS but is acute in nature.    Some believe that Fibro can cause all of these symptoms also. As can other things.
Based on my experience with MS, which is more than I wish it was!:  (the MRI machines that you mentioned, they are the most commonly used ones and considered by many to be ok in the way of diagnosis.  The more advanced ones show more detail, but it isn't often that one machine will show no lesions and that the other one will.  If you had ones that were visible on the more powerful one but not on the other,  they would be just starting  and you had MS, that would mean it's in very early stages).
1. MS is a very complicated disease- there are over 100 possible symptoms and no 2 patients will have the same case.  Each case is different.  No one will experience every symptom as well.
2.  The % of people who have MS but have a negative MRI is very small.  
3.  MS is commonly misdiagnosed, so it has made some doctors go to the other extreme- be cautious about diagnosing it unless it is very obvious to them.  
4.  Most MS patients have been to several doctors prior to receiving the correct diagnosis of MS.   Often they have been  diagnosed, then been undiagnosed, etc...
5.  MS is a disease of exclusion.   When I was diagnosed with it initially several years ago, I had first been tested for everything  under the sun.  Then after I was diagnosed by one doctor, I went to a reputable MS clinic and was told that I didn't have it and felt prob much like you do right now.  6.  From MS specialists to regular neuros to family doctors- they all have different ideas of what MS looks like and go by their own presuppositions.
using myself as an example- my second opinion was at an MS clinic where I was "undiagnosed" which was very confusing.  They must be right, wouldn't they be, after all they are specialists?  In my case they were wrong! I understand today what I did not at that time- The specialist does studies, often is looking for a project- which would be someone with an obvious case, he isn't focused on patient care. Sad to say.  You don't meet his "criteria" (as I didn't either my first time seeing a specialist).
7. A family doctor knows you better, has been with you for a while and may pick up on things that a busy specialist who rushes you out the door might miss.   He has no personal interest in you as the others might.   There are times when a family doc might pick up on it by putting your whole history together.  Don't "bother" a specialist.  (not my words here)
8.  Many people are brushed off in the beginning only to show back up with more obvious symptoms later. (I mean clinical here- as in MRI changes etc.  Doctors don't think like we do- they have to SEE something.  They are going by a textbook.  If a patient meets A, B and C then they have it, if they are missing these criteria, check. There is no MS, per the doc.
9.  Doctors are often as varied in their perception as the symptoms are.  The specialist that I saw said my lesions weren't "typical" of MS.  The neuro
that diagnosed me said that there is no  "typical" in MS.  Guess who was right? Years later my baby lesions have grown, multiplied and had babies of their own.  I now am under the care of another specialist who has helped me a lot.
10.  I went with the opinion of the first specialist that I saw.  It was about 6 months later that I had another bad flare that I got a third opinion (my current doc was my 4th) and it was much more obvious at this time.  In my case it just had to take it getting a little more obvious.  Doctors aren't gods and sometimes we get mad because they aren't perfect.  The field of medicine is so huge, no doctor is right ALL the time.  Most often it will be caught before it becomes really disabling.  But in other cases it is disabling from the start. (only 10% are the kind that progresses from the start  called primary progressive- in these cases it is rare to be told you don't have it.   very quickly and most of the time it is seen in men)

Those are the point that I thought I would make.   Your options are to keep trying to find a doctor to diagnose you.  Let me warn you though, because so many doctors do see patients who convince themselves that they have MS that they try to single these out.   A history of going from one doctor to the next is sometimes a red flag to them. Even if it's not true, a lot of doctors will not contradict what another doctor has determined.  This is a hard place to be.  Doctors are often friends.  If their buddy has said no, she doesn't have it, then a doctor might not want to step on his toes.  
Sometimes someone can go to the doctor with medical records organized, knowledge of the disease and of the diagnostic tools and this signals to a doctor (even if it's not true) that they have a professional patient in front of them.  Doctors can be egotistic and they don't like their patient acting like they know more than they do.  
This is easier said than done, but if you go about your life and wait for another attack and then go to the doctor, if you have MS, doing this will make a doctor tend to think MS.  If they see that you are trying to have a life and this is stopping you.  I have learned to let a doctor determine something on his own rather than suggesting anything.   I never tell a doctor that I have been reading anything on the internet (although that is so often where we get the best info, but taking all things with a grain of salt).   They love to conclude that someone has certain symptoms bc they read about them! (I am dealing with something right now that I read about that I think I have and the diagnosis isn't coming as early as I feel it needs to) .
So I guess your options are to keep looking for a doctor right now, which may take 6 months of hunting or you can wait and if you have another relapse then go.   but you risk appearing like the things I mentioned above.  
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