My neuro is okay in that he will increase my gabapentin as needed and is responsive to see me relatively quickly if needed but I am now looking to find a neuro or other specialist who is more familiar with TN and face pain (my neuro specializes in MS).
What is the best way to search/screen doctors to find one who will understand? A good deal of my troubles have been that I work full time M-F and have very little private time to make phone calls and taking time off from work for doctor appointments is a challenge, not to mention if I do it too often I am seen as a problem employee. How do we get information out of the ones who actually answer the telephones at a doctor's office about what the doctor deals with or knows?
Hi Shadow, couple of things come to mind. When calling the doctors office, be upfront and direct. "I was recently diagnosed with TN and am looking for a neurologist who specializes in this condition. Specifically someone who will be able to give me a full work up and spend some time going over treatment options. Is this something Dr. Jones does? ..... If the answer is no or he's not taking new patients ask for a recommendation for someone in the area who does. If the receptionist says she doesn't know.. ask if they would mind checking with the doctor or a nurse for a recommendation.
Now is a good time to round up your medical records and any scans/MRI's you have had done (not just the report, but the actual CD) and put together a Medical history and timeline and of course a list of medications you are currently taking - include drugs you have tried that you stopped and for what reason. You can tell them when making your appointment that you have your detailed medical history and a copy of your medical records and ask if it would be beneficial to bring by before your appointment for the doctor to review prior to your appointment.
Remember that the doctor works for you and you are paying for his services. When you call you are actually asking to interview the doctor to see if he/she is a good fit. If you sound direct and in control, the front office will usually pick up on it and treat you accordingly.
A good book for managing your doctor (available thru Amazon):
Ten Essential and Simple Steps to Managing Your Doctor Empowering you, the Patient Dr. Danielle West-Stellick, ND
I can completely relate to having difficulties calling during working hours, having no privacy and playing phone tag. It can be very tough. For me, being up front with co-workers or boss that you are trying to get a hold of your doctor and may need some private time to make phone calls or to be available when they can call you back. Some doctors offices communicate thru e-mail or have a link on their website which may be helpful. If you come to the point where you are having to take extended leave; you may be able to use short-term or long term disability - you don't have to use the time in one chunk you can it set up as intermittent. And there is also FMLA... check with your HR department just to find out what is available and what you are entitled to. It's best to know this up front - I always say knowledge is power and the more information you have up front the easier it will be to make decisions when and if the time comes. I used FMLA on and off for 7 years. I think you are entitled to 12 weeks and that is per year.