No neurologist or mri?

[hbn74]

Well, I had my dr's appointment today and we discussed the ENT's diagnosis of TN. He started me on 100mg tegretol and 25 mg of amitriptyline. Is this standard? He also said that we would "wait and see" how the medication worked and whether it relieved my symptoms before scheduling a Neurologist or an MRI. He said if the medication relieved the symptoms then I wouldn't need the appointment. That sort of surprised me... I thought those appointments were standard with something like this. Does anyone have any input on that?
I was going to change doctors after my ENT appointment because it seems like things have taken forever with this guy. He didn't listen to me and didn't really do anything to help me. If it weren't for that doctor filling in I wouldn't have even seen the ENT.
What's holding me back? We have one medical clinic in my town.. and I'm hesitant to go to the very same clinic for a second opinion. I feel like they all stick together and I might offend them if I do it.
I just don't know what to do? :confused:

T

[JeanC]

Hi, T,

Insist on the referral whether the Tegretol helps or not. You need a neurologist either way - one who has experience treating TN. The Tegretol will help pin down the diagnosis but that's just the beginning of your treatment. There are other meds out there that may work better for you and he is probably unaware of them. Tegretol was the "gold standard" and probably all he knows about though Amitriptyline is a good add on and often used for the more constant background pain. Many more have come along in the past few years. I find it odd that a primary care doc would prescribe both right off the bat, but I'm not a doctor. Just my two cents' worth.

If your doctor is offended by your getting a second opinion or switching doctors then you definitely need a new doctor even if you have to go to the next town or a city or Manitoba to find one. The doctor is there to live up to your expectations, not the other way around. If this one is a bad fit, that's his problem, not yours - try a different one. If they're unable to handle the load of patients in your town (he didn't seem to have time for you), they need to know that, too. He should be worrying about meeting your needs and treating you the best way possible. [Oops - just read back and realized you're in Canada, so not so easy to do all of what I just said. But it's your health and your life you're talking about so you need to do whatever it takes to have the best life you can. Maybe Ella can help you with links or doctors. Or try the University of Manitoba - they have a very good web site on TN - http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/index.html or the TNA Canada - http://www.tnac.org (http://www.tnac.org/) or Canada TNA - www.catna.ca (http://www.catna.ca/)]

Is there a TNA Support Group anywhere in your area (see the TNA web site - www.endthepain.org (http://www.endthepain.org) - under Patient Support, International Support Groups, or the Canada TNA sites above to find out)? You can contact the support group leader or telephone support contacts and see if they know of TN literate docs in your area. Or call the TNA, here and ask if they know of any, or anyone you can contact for referrals - toll free number is on the web site or in the sticky threads at the top of the forum thread list.

Good luck and be assertive. Squeaky wheel and all that...

Jean

[hbn74]

Thanks Jean, I'll definately check out all those links you gave and look for a support group near me. I sort of doubt that there is one, I'm in the middle of nowhere... there's not really anything around me.
I think I've decided to make an appointment with another doctor at the clinic, and see what I can do about those appointments. Thank you so much for your support, I really wasn't sure if I was over reacting, but this has been one long series of dealings with this doctor that just aren't satisfactory.

Jeez, what a pain in the *** this all is. And the face too ;)

Good luck and stay well,
T

[baywatcher]

Seconding Jean, she gives you a nice clear road to follow, but I'd also suggest that if you don't get complete control from the meds you're on, it may be because that's a pretty low dose of tegretol. If it's being used diagnostically - and you aren't at a high enough dose - you may not get the information you want.

I can sympathize with the "middle of nowhere" situation. I, too, know what it's like to face at least five hours on the road for every short appointment with a specialist. And yet, if you liked your pcp and felt comfortable with your interactions, after you're diagnosed and proceeding with a course of treatment you can let the daily/weekly/monthly management of your medical needs be handled by your local doctor. I'm quite comfortable with my primary doctor carrying through with anything we learn from a specialist.

It's not unusual for a doctor to have a patient want a second opinion. I wouldn't think anyone would feel offended. Only one clinic in town though? That does make it a little touchy, maybe, if there's a big disagreement? (I won't even visit my doctor's backup physician because I have zero - make that minus zero - confidence in her.) Geting the right diaagnosis is definitely your first step on the way to feeling less pain, so good luck. Nancy

[ella138]

I agree with Jean and Nancy, you need to get an appointment to a neuroligist. I have no idea how your health care is, but I am in Ontario Canada and it takes forever to get an appointment with a specialist, so when I think I might need to see someone other than my GP, I insist on an appointment, whether it be a dermatologist or a neurologist. If by the time my appointment comes around and I dont need it, I cancel it. You have to work the system or you get left out when you need help the most.

100mg of Tegretol is a very low dose. It may or may not do anything for you. There is a Canadian Association for TN. Their website is http://www.catna.ca/. I looked and there are two support groups in Saskatchewan (haven't had to spell that province since grade school!). The email address for the one in Regina is regina@catna.ca and the address for the one in Saskatoon is saskatoon@catna.ca. Ask them about the doctors in your area who know about TN. You need to be very proactive in helping yourself with relief from your TN. Speak to those in your province that can point you in the right direction. If you need to drive to get to the right doctor, then do so. It's not like you need to see them often. Once you establish yourself as their patient, you enter their "network" and you can do stuff on the phone or they can connect you with someone closer to home and keep an eye on you that way.

Don't let the medical system or any doctor take control of you. You take control of them. I don't know about you, but I know here in Ontario I pay a fortune in taxes for my health care system to take care of me and they owe me help when I need it! Don't be shy!

[Silver Swan]

Dear hbn74:

There is a TN forum in CA and it is very good. There are quite a few support groups throughout Canada. Here is the URL for the Forum:

catna.ca/talk/

Please have a look at this forum and note the locations of the support groups.

Shirley H.