Wow!
Haven't we had a lot of discussions lately on our out of touch "specialists". Believe me... I am in your corner and hear all the complaints. This is all making me scared to see my new Doctor.
I would like to say something about the Neurologist we ultimately choose (or get stuck with)
- Choose someone with a bedside manner that suits your personality. If you can't cope with their personality...time to move on. BUT if you think they are a good Doctor and this is the only thing standing in your way of having a better life...........challenge them on their personality. What do you have to lose? Don't be confrontational. Be very calm, rational and reasonable in what you are asking them. Don't speak in generalities. Be very specific about something they have done or said that has rubbed you the wrong way. This way you might not come on as a whiner but you might alert the Doc to something they forgot along the way. Our family has done this with my Aunt's lung transplant Doctor (who is known for his gruff manner). We get along amazing with him because we have expressed to him we expect to be treated with respect and dignity.
- In my recent research I remember hearing ONLY A SMALL % OF NEUROLOGISTS WANT TO DEAL WITH TN (possibly Dr. Casey's video? sorry...foggy brain) I think the number was as low as 10 - 15% !!!!! This is not total Doctors - this is only Neurologists!!! Even they do not want to deal with TN. If you have a Neurologist that is not interested they will not attend seminars or do extra research on TN. How will that help you? FIND SOMEONE WHO ROUTINELY TREATS TN. This may be difficult, but connect with people in your area and get patient referrals. If enough patients are seeing a particular Doctor in a given area - that Doctor may become the "go to" person for TN in the area.
- Be knowledgeable. Have your list of questions ready at each appointment. Do not leave until they are all answered. If the Doctor leaves, tell the receptionist you still have questions that cannot wait until the next appointment. Come up with a treatment plan with your Doctor - do not just "take these pills and see". Try to get an answer of "what if they work.....what if they don't work" when you change medications.
- I know patients should be knoledgeable but I have heard that many Doctors out there do not like patients that are their own Web Doctor and have read too much on the internet. Personally, I think with the rareness of TN, we have to know because we can't rely on Emergency Doctors and GPs to fully understand. With that said - we have NOT attend Med School (well most of us haven't) and we do have to give some respect to the Doctor when they are suggesting treatment options.
- Rely on your pharmacist. They will be the one to alert you to drug interactions and explain all the nasty side effects. I have found the Doctor wants to find the right pill, wheras the pharmacist will tell you the effects of the decision.
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I hope anyone hasn't taken this discussion as a slap in the face to their bad experiences. Those experiences should have never happened and in some cases - shame, shame to those Doctors. I think we just really need to take control when it comes to our Doctoring, because we don't have time to see 3, 4 or even 5 Neurologists before we get the right fit.
Trying to follow my own advice for my first appointment in 4 years this April. After all this I will likely remember 10 things to ask the minute I step out of her office!
Have a great March everyone
Elaine