Avatar universal

How many Neurologists does it take?

Recently I have been told by my PCP, Ophthalmologist, Pain Management Specialist, and Neurosurgeon that I need to be worked up for a neurologic disease, most likely MS. My neurosurgeon even sat me down and explained how times are much better for people with MS, there are a lot more options, and the quality of life is better than it was years ago (in other words he gave me a pep talk). My neurologist disagrees with all of it. So when my neurosurgeon referred me to a subspecialist in the disease, my neurologist batted it down because they work for the same company (even though it is in different cities, different office names and work different hospitals). He has to give his permission for me to be treated by any other neurologist (regardless of their sub-specialty). My PCP is trying hard to get me seen by someone “outside the system” (which is ironic, since he works for the same company as well) however it too is in another city, and I am concerned that the insurance won’t cover my seeing two neurologists.

Quick breakdown symptoms:
-L-leg weakness, bladder incontinence (I have since bought stock in poise…), Double vision (ghosting images), hx: optic neuritis L-eye, multiple falls, stumbles and balance issues, intolerance to cold (and more recently to hot...my favorite hot tub now makes me act like I’m having a stroke – which was no fun considering I was at the YMCA when it struck), and fatigue that hits like a car running out of gas.

Tests performed:
-MRI of brain in 2009 was normal (not MS protocol, nor T3, nor contrast)
-Recent MRI of Thoracic spine revealed 3 lesions (all approx. 2mm thickness) (neurosurgeon said I needed testing)
- Recent EMG of leg showed blockage of signal from spinal cord above the lumber region (This is where the PMS said I needed neurologic dz testing)
-Full eye exam showed double vision is stemming from distortion of signal to optic nerve (this is where Ophtho said I needed testing)

Limbo is such a horrible place to be. It doesn’t seem quite fair with so many physicians in agreement that the one person who apparently needs to give the stamp of confirmation refuses to do so.

Questions I would love the know:
Has anyone else run into this sort of thing and if so how did you handle it? How long did you give your original neurologist before you sought out another? How many Neurologists did it take for you to finally get your diagnosis?

I apologize for the length.
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Avatar universal
Welcome, sgbear.

I'm sorry you're stuck in an HMO quagmire. You definitely need outside help, and should pursue every avenue to see another neuro. Many of us have seen quite a few of that species, with my total being more than 6 (I've lost count). It's rather like how many neuros does it take to change a light bulb. That depends on the neuro. I finally found one that is knowledgeable, and that made all the difference.

Just one technical comment: EMG tests show abnormalities in the peripheral nervous system, which by definition is not MS. There's nothing saying, though, that one can't have both peripheral and central nervous system conditions.

My best advice is to keep plugging to find the source of all of this, whether MS or something else. If your PCP is in your corner, that's all to the good.

Helpful - 0
488198 tn?1493875092
The neurosurgeon may have been giving you a “pep talk,” but I think he’s right! You wrote what your neurologist doesn’t want you to do, but I’m curious what he does want you to do, what his plan is to keep you as healthy as possible. My PCP and neurologist at onset didn't have a plan, but I had new ones 10 years later to give me the diagnosis.

Insurance coverage is a fair concern, but I absolutely believe you need to see the subspecialist. Although MS has mimics, nothing you have reported here seems to rule it out so far.
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382218 tn?1341181487
Can you appeal to you insurance company to waive the requirement for the neurologist to agree to a second neuro opinion?  Stupid question perhaps, I'm in Canada and have never heard of such a requirement.  As second opinions in complex cases are, I would think, considered to be a good idea, in a case such as yours this should be considered.  Has your neuro explained why he doesn't support this?

Failing that, can any of these other physicians order testing typically undertaken for MS, eg: can the ophtha order brain MRI, visual evoked potentials; can the neurosurgeon order a lumbar puncture; can PCP order any/all of them?  Not ideal of course, to do this in piecemeal fashion, but perhaps something  will come back that will convince your neuro to either support a second opinion or take it upon himself to further explore the possibility of MS.  

To answer your other question, my case was very different from yours so can't really compare in terms of how many neuros did it take to dx.  The first one I saw didn't think MS, even though my GP was certain I did, because my initial MRI looked clean and my only symptom was Lhermittes sign, which had remitted by the time I saw her.  Nothing else happened till a year later when a severe multifocal attack (double vision, a LOT of numbness and tingling on both sides of my body, MS hug, crippling fatigue, poor balance, vertigo) came on fairly rapidly, prompting an urgent brain and neck MRI referral, which showed lesions, which prompted an urgent neuro referral, which prompted a same-day LP, which all resulted in a very probable MS dx and a visit to the MS neuro a few weeks later who confirmed what we all knew.  So by the time I saw the second neuro (the on call one, who was actually a myasthenia gravis specialist) the writing was on the wall.  Over the course of that weekend at that hospital, I saw several neuros and residents, all were thinking it had to be MS, and they even treated me as such with steroids.  The MS specialist did the official dx, but I already knew it was coming.  So, a very straightforward and speedy dx for me.

I completely agree with you that it's unfair you aren't able to get the further testing you need because of that neuro.  If these other docs can't order testing themselves, can any if them call him and try to influence him to change his mind?  
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Avatar universal
Well, if you FIRE your neurologist, then you don't need his permission to see someone else...............if you get another neurologist, I would certainly file a letter of complaint against the one who won't let you investigate further.  That's just plain ego.

There are no MS lesions in the lumbar region, they stop with the thoracic area.  It appears you need more testing and for us to speculate, would be wrong, based on what you've told us.  We are just patients helping other patients, but your neuro is just an idiot.............and time you told him so!

Just my opinion and I've had 4 lousy ones before I got a good one!
Helpful - 0
198419 tn?1360242356
Hi there,

Don't be sorry at all. Typically insurance does not have a problem with 2nd opinions. Also, what people don't realize is that even in a referral situation (is this yours), once the primary writes the referral to the specialist that you seek, if the office takes the insurance, you are covered. You'd also be surprised at how many doctors offices accept the out-of-network payment. For instance, my 2nd opinion was at Johns Hopkins, by no means an in-network hospital, or specialist. However, it was completely covered.

So, don't fret. Just stick with your primary, do the research and get in with one who has a well recognized neurologly dept. and get there for an unbiased look.

Wishing you the best. Thanks for joining us!
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Avatar universal
     essdipity:    6 neurologists...I'm sorry you had to go through so many. That sounds a bit discouraging...I don't think there are that many groups in the area here. As to the EMG...her report stated "Delayed recruitment indicative of upper motor neuron lesions" I'm scared to ask, but how long did it take for you to get diagnosed?

     TLC_31 and doublevision1:  What my neurologist would like to do is send me to physical therapy and be done with the issue all together. Even though my physical therapist said they can't do anything to help when I can't move the leg (I need a physical rehab specialist...though neurologist disagrees there too...but that is another long story - sadly I have two separate issues going on at one time, which I admit is making things harder - recovering from a car accident) However, after arguing back and forth for nearly an hour, he agreed to "appease me" and order tests he feels I don't need. So I am currently scheduled for an MRI (w/contrast -T3) of the head and c-spine, and an Evoked potential...and after further pestering a referral to a urologist to help what is in my opinion the worst part so far...the incontinence. He told me (I kid you not) "When all of these come back normal...and they will...THEN you can go find yourself another neurologist."

     SarahL2491: If I thought it would make a bit of difference I would gladly file a complaint...because this isn't the first ball he or his office has dropped (in my opinion). Unfortunately, since he is employed by a big hospital franchise (owns nearly every hospital in the area, save 2), it would fall on deaf ears.

My favorite quotes from him so far "It can't possibly be coming from your spinal cord, because weakness is not a symptom." (Regarding the weakness in the left leg); "It doesn't matter what the test results say, your physical exam doesn’t line up with it...they just don't jive" (regarding the push for further testing for a neurologic disorder based on results from tests by other physicians). The very next minute defending a test HE ordered to test for a brachial plexus injury [from car accident—again two issues going on simultaneously]…”It doesn’t matter that the test [MRI of pelvis] was negative, your physical exam reflects it.” – Neurosurgery ruled his diagnosis out as well not just the MRI…to this he simply said “Well, I think he is wrong.”

--- As serious as this is I just can’t help but still find the humor in all of it.
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Avatar universal
Just to clarify, the insurance isn't too much the issue at the moment (thou addmittingly the bills coming in do hurt) as much as I would like to know how long do I stay with this neurologist, how do I get rid of him when its time to move on? and how do I get a new one, when they are all affiliated?
Helpful - 0
1831849 tn?1383228392
I'm a little confused about your insurance/coverage. You can see a PCP, Ophthalmologist, Pain Management Specialist,Neurosurgeon and neurologist but need the first neurologist's PERMISSION to see an MS specialist?

Also you mention that these docs all work for the same company. Is this the company you work for? A group medical practice?

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Avatar universal
Kyle: The reason I need permission is because the neurologist works for the same company...that isn't an insurance requirement, but a policy within that group -- problem is they are a HUGE group..that until then I didn't realize everyone was connected.

The organization that owns the hospitals in the area (a total of 9) , also owns private practices (also the building I work in, hense the omition of the company name). So apparently any neurologist under thier umbrella is considered to be partners with my neurologist, and therefore has to give his permission for anyone else to treat me (which he won't).

But there is good news on the horizon...Gotta luv my PCP...There is another group outside the "system" and I am in the process of getting an appointment with them...YEA!!

***Last Question....at least in this regard...How do I explain that I have/had another neurologist that couldn't/woudn't help?
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Avatar universal
simple, you want a second opinion, then if you like this new person, you can gently suggest that they were too controlling and wouldn't let you seek another opinion.

I shudder to remember being in a HMO that basically did the same.  In fact, even now, I'd love to have a urologist who understand MS but have one who is excellent with stone blasting but doesn't know crap about MS and admits it, but because, like you, he is part of a group, I cannot use another in the same group.

So when I need UTI help, I hit the walk in clinic....easier........but fully understand the rock/hard spot you've been in.

bless your PCP!
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Avatar universal
Ahh, Urology is my next hurdle. I am sorry that you are having trouble with it. I was refered by the neuro after I insisted there had to something someone that can do something to help... so my appointment was made by his office....the end of May. :P Why does everything have to take so long?!?
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1831849 tn?1383228392
It takes so long because there are only so many quality docs and lots of folks who want to see them.

Don't worry about telling neuro #2 that you have seen neuro #1. You really don't need to tell him anything more than you wanted a second opinion, as Sarah said. When I walked in to Neuro #2's office I had a 1/2" thick file full of test results and CD's of brain and c-spine MRI's. He probably guessed that I had seen another neurologist :-)

This is your health, not their's. You need to be firmly in control of what care you receive, and from whom. This monolithic monster practice you describe is one that I would run away from as fast as I could.

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