The first neurologist I saw was nice enough, but left me with the impressions that 1- the office was way too big (it is right in a teaching hospital) and busy so it would take days just for call backs, and 2- that they will only agree to testing bit by slow tiny bit. I hated feeling like I had to have a major issue flareup before they would consider testing.
Last Friday I saw a neuro-opthamologist, and he was absolutely wonderful! The VEP test showed an 8 millisecond delay in my left eye, and he is using that to justify aggressive testing, lots of blood tests and a new MRI (on a 3T instead of a 1.5T machine) of my brain, along with MRI's of my neck and chest/upper spine. He also said if I have any new issues, or anything gets worse, to call them and they will want to see me the same day! The first neuro admitted it could take her 3-4 days just to return calls!
Obviously, I'm much happier with the neuro-opthamologist LOL I guess I need to "fire" the other neuro. I also need them to tell insurance that I am NOT going to go for the neck MRI that they ordered so that insurance doesn't flag my case because of two MRI's ordered for the same area.
What is the best way to go about firing the neuro and asking them to let insurance know? Or should I just call insurance myself? Also, should I be requesting a copy of my records from the neuro? I only saw them one time. And, if I should get my records....is there usually a cost involved?
Hi, Jess. Don't know if you remember the long-ago hit song, '50 Ways to Leave Your Lover.' Well, I'm not sure if there are 50 ways to fire your neuro, but all you need is one. Just make up your mind and do it. The old one is the pits.
Your insurance situation might be dependent on your individual case. Some insurance requires authorization in advance for every appointment and every procedure. Take a look at your written explanations, and feel free to call them with any questions you have. You don't want any ugly surprises. This is a good time to make sure you understand what you're entitled to and what your requirements are.
I strongly suggest you get your own copies of the reports from the old neuro, and that you keep copies of every kind of medical records from now on. Sometimes there is a charge--this is something you should ask about. Then if you need them for a subsequent doctor, you have them, but only for them to copy and give back to you. Many doctors will fax without charge your reports to a new physician, if the request is made by the new place. You will have had to sign releases, as required by privacy laws. This rigmarole is sort of annoying, but worth it.
Your old neuro is way too busy, and believe me, won't care and probably won't even know you have moved on. The office staff makes sure that procedures are followed correctly, an that's about it.
One small thing, though, and it's about the neuro-ophth. I'm very surprised that the 8 milisecond delay has been oonsidered abnormal. From what I've read, the usual cut-off is 15. Please keep us posted on this.
I'm thinking the same thing as Alex. There aren't even any neuro-ophthalmologists close enough to me that it's an easy thing to see one. I'd be a little surprised if he follows you long term for care or is even the one to officially diagnose. He might have a good referral to a neuro or MS specialist though.
I'm glad this wonderful doctor set up all the testing for you. If I remember right, he made a little bit of a stretch with the numbers to justify ordering the tests he felt you needed. Make sure you get all the written results from him. When you go for the MRIs ask while you are there to have a copy placed on CD to take with you. I've never been charged but would have gladly paid to have the record in my possession.
How I fired my last neuro:
(after getting the referral for a second opinion and copies of everything done in that office)
(after being assured by the MS specialist that he would see me for f/u testing and care)
Ringy dingy to the appointment desk.
Me: "I need to cancel a scheduled appointment." (and it's way early so don't charge me)
Her: "Would you like to reschedule?"
Me: "No, thank you."
Her: "OK. Call if you need to schedule again."
Just be prepared to state that you are being seen in an office that is a better fit with your needs. You can be sure that someone else has dumped their doc and started up with the one you are leaving. That's the way it goes.
CAUTION: I did have insurance once that wouldn't allow the second opinion doctor to assume my care or perform any advised surgery. They perceived that as a conflict of interest. I see their point. Either way can muddy the waters of diagnosis/decision making.
Thank you everyone for the replies! I did not realize a neuro-opthamologist is not a normal doctor to see for this LOL The one I'm seeing is an MD and Ph.D...does that make a difference? I know he treats his patients, not only diagnoses them. He was highly recommended by a current MS patient of his.
The neuro I'm "firing" is an MS specialist. I thought the doctor was nice enough, but the office is part of the neurological center in the actual hospital and it is just so busy! I don't mind busy if I felt like I was being taken seriously. I've read, and been told, that diagnosing MS early is key to slowing progression, so it was very frustrating to feel that I had to have a major flareup to start even looking at trying to diagnose this. Heck, just this morning I called to request a copy of my records, and sat on hold for 30 minutes without ever talking to a live person. I finally hung up and called back and just left a message. A message I had left over a week ago has still not been returned (compared to my new doctor who said if I have any new symptoms show up I should plan on getting in to be seen that day)
The 8 millisecond delay I guess is enough to warrant further testing but not enough to diagnose. I had one issue with my vision, back in November, where I was having trouble with bright things, they just seemed overly bright and hurt my eyes. That lasted a month and cleared up. I can feel my eyes taking longer to focus then they used to, but that is the only issue with my vision now.
But, I think when he added in the hyper reflexes on my knees, tingling and heavy muscles on my left side, some past numbness issues, muscle weakness, vertigo, and the newest symptoms of feeling like there is water on the left side of my neck...he thinks it is enough to test further. Thankfully!
Thank you everyone for taking the time to answer my questions! I hope you all are having a good monday :-)
Your scenario is very familiar with mine. My MS neurologist is in a large teaching hospital as well. They don't have an MS center anymore, don't know for sure what happened with that. And, no real MS nurse to speak of. Like you, I would call and maybe get a call back the next day or even later than that. I NEVER get to talk to the neurologist and getting an appointment that day or even that week was unlikely as he was so busy.
I am in a relapse now and who do I need to go through to get help, his nurse. My primary care doctor told me that I had to change to a new doctor because not being able to get promp responses and care is UNACCEPTABLE. I got another referral and am calling that new doc tomorrow. You probably need to do the same.
I'm not sure if you will end up with a private practice neuro or another academic neuro, but know one thing that private doctors don't necessarily move any faster. My experience has been, and this is only one person amongs a large group of many, is that the academic/university neurologist was more aggressive than my previos private neuro in getting testing done and did not sit on the fence about the ultimate diagnosis.
I wish you good luck in finding a new neurologist and like everyone has already told you, get a complete copy of your records even if you have to wait on hold or pay for them. It is money and time well spent.
Put it this way, it's as simple as, never going back.
After my accident, I was seen by a Neurologist in the Trauma Unit, and told I would see him again for a follow up, after my release from the hospital.
I went to see him, he looked at my X-ray (of my neck), not an MRI, because he initially said I had broken my neck.
I told him all of my neurological symptoms I was having.
He told me, that my neck was not broken, that I had degenerative disc disease, and probably had it for some time, but I didn't need surgery (at least just yet).
I asked him about all my other symptoms, etc. and more importantly, when could I return to work (knowing how bad my symptoms were, I expected him to say, not for awhile, at least). He said I could return to work immediately, and not to return unless I wanted surgery on my neck).
So, I went home, and my family doctor called (without me telling him what happened, mind you) telling me he had set me up for an appointment with a different Neurologist.
Thank you for your reply! It was very interesting to me because I was diagnosed with degenerative disc disease of my lower back 3 years ago. This was after my first incident/occurrence of fatigue. I did not start having neurological symptoms until this past November, from what I can recall anyway (though I've always had problems with heat exhaustion/sun stroke type of issues).
Did your second neuro agree with the degerative disc disease?
Oddly, my lower back is the only area not giving me problems in the last few months LOL
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