I had my first neuro appointment last Tuesday, and things did not go quite as I expected. I was asked to fill out a four page questionaire about all my symptoms, which I was happy to do. The nurse was very nice and helped me get started on it, then I finished it on my own while waiting for the dr. He comes in and says, "So you heard the good news about your MRI, right?" I told him that the nurse at my GP's office told me it "looked fine" over the phone, but had set up this appointment with him.
So he sits down at the computer, pulls it up, starts flashing through images and tells me it is clean, good news. Then asks, "So why are you here?" Not sure if it was the way he said it, my mood at the time, or what, but I got emotional and didn't know what to say. So I just said, well, my dr told me to come here. And then I mentioned that my GP had thought there was a possibility that I may have MS because of my symptoms.
The neuro then went back to the MRI, flashes through some pics again and says that my brain looks great, there is no way I have MS. I'm looking at the pic that is currently on the screen, one shot from after the contrast was injected, and I asked about a couple of white spots I could see, very small. He emlarges, takes a closer look, then says it's nothing. He then tells me again, you don't have MS, that's good news. I said yes it is, but I do have other symptoms that I'm wondering about. I then try handing him the questionaire that the nurse had me fill out and he doesn't want it. Sets it down, and says no, you tell me.
WTH??
So I then tell him about the ophthamologist saying I had had a mild case of ON, and I gave him the letter from my ophthamologist and the print outs of the visual field exam. He starts reading the letter out loud, looking at me strangely from above it, and a couple of times says, I have no idea what this means. When he's done, he tells me that no, the ophthamologist was wrong, there was absolutely no way I could have had ON because it didn't show on the MRI. Then he says again, I've given you good news, why are you wanting to stay here.
At this point, I'm almost in tears. I don't even remember most of my symptoms, and can barely bring myself to talk. I finally get out that I have been having increasing problems with my balance and about the stabbing pains in the side of my face that my GP thinks is trigeminal neuralgia.
At this point, he asks me to sit on the exam table and so I think, finally, he's actually going to examine me and address my concerns. He looked at my eyes, checked reflex at my knees and two spots on my arms, then started asking me about my facial pain. I tell him, then he asks if there are certain triggers, things that always set of the stabbing pain. Well, no, not ALWAYS. It does happen most of the time when I am rinsing/swishing water in my mouth after brushing my teeth, and if I am chewing something very hard (I've ended up modifying what I eat so I don't have this as much) but it happens other times as well when I can't predict it. He then tells me that I don't have "real" trigeminal neuralgia. What?? Ok...
He goes and sits at his computer and tells me it was nice to meet me and he was glad he was able to give me good news. I ask him if there is anything that can be done for the facial pain, even if he doesn't think it is real TN. I'm practically begging him at this point for medication and in tears. No, I'm not proud of that moment, but I thought at least if I'm getting nothing else out of this appointment, maybe I could get something to help alleviate the TN attacks. My daily life is seriously suffering at this point. He finally agreed to prescribe two months of oxcarbazepin, 150mg x three per day.
It has been six days on this, and so far, it is not helping.
So, he never even looked at the paperwork I filled out, never listened to all my symptoms and my story, and never did any type of exam to check my balance, even though that is the one thing, aside from the face pain, that I mentioned specifically.
He then told me at the end of the appointment that I should be grateful I am young and healthy, and not like his usual patients who have alzheimers and ALS.
So, now I'm at a loss really, of what to do. I've been with my family dr for 16 years, and have always really liked him and respected his opinion. But two years ago he moved to a network of drs that I really do not like how things are run anymore. I called on Friday to ask for a referral to a different neurologist, but the only other two options they gave me are both in the same group as the one I saw.
Am I crazy to want another opinion? Is what that neuro saying really true, and it's not MS because the brain MRI was clear except for a couple of white spots (which he never even explained to me what those were). I guess after researching I was expecting a more thorough exam, him wanting to know all my symptoms and when they ocurred, and possibly more testing. Do I WANT more testing and more dr visits. No, really I don't. But if that's what it takes to figure out what is wrong with me, then yes, I will do it.
He seemed to have pretty much made up his mind about me before he even walked in the room.
So I guess now I may have to changed my primary/family dr, so that I can get a referral to a different neurologist.
Or just give up trying to find answers for now.....
So he sits down at the computer, pulls it up, starts flashing through images and tells me it is clean, good news. Then asks, "So why are you here?" Not sure if it was the way he said it, my mood at the time, or what, but I got emotional and didn't know what to say. So I just said, well, my dr told me to come here. And then I mentioned that my GP had thought there was a possibility that I may have MS because of my symptoms.
The neuro then went back to the MRI, flashes through some pics again and says that my brain looks great, there is no way I have MS. I'm looking at the pic that is currently on the screen, one shot from after the contrast was injected, and I asked about a couple of white spots I could see, very small. He emlarges, takes a closer look, then says it's nothing. He then tells me again, you don't have MS, that's good news. I said yes it is, but I do have other symptoms that I'm wondering about. I then try handing him the questionaire that the nurse had me fill out and he doesn't want it. Sets it down, and says no, you tell me.
WTH??
So I then tell him about the ophthamologist saying I had had a mild case of ON, and I gave him the letter from my ophthamologist and the print outs of the visual field exam. He starts reading the letter out loud, looking at me strangely from above it, and a couple of times says, I have no idea what this means. When he's done, he tells me that no, the ophthamologist was wrong, there was absolutely no way I could have had ON because it didn't show on the MRI. Then he says again, I've given you good news, why are you wanting to stay here.
At this point, I'm almost in tears. I don't even remember most of my symptoms, and can barely bring myself to talk. I finally get out that I have been having increasing problems with my balance and about the stabbing pains in the side of my face that my GP thinks is trigeminal neuralgia.
At this point, he asks me to sit on the exam table and so I think, finally, he's actually going to examine me and address my concerns. He looked at my eyes, checked reflex at my knees and two spots on my arms, then started asking me about my facial pain. I tell him, then he asks if there are certain triggers, things that always set of the stabbing pain. Well, no, not ALWAYS. It does happen most of the time when I am rinsing/swishing water in my mouth after brushing my teeth, and if I am chewing something very hard (I've ended up modifying what I eat so I don't have this as much) but it happens other times as well when I can't predict it. He then tells me that I don't have "real" trigeminal neuralgia. What?? Ok...
He goes and sits at his computer and tells me it was nice to meet me and he was glad he was able to give me good news. I ask him if there is anything that can be done for the facial pain, even if he doesn't think it is real TN. I'm practically begging him at this point for medication and in tears. No, I'm not proud of that moment, but I thought at least if I'm getting nothing else out of this appointment, maybe I could get something to help alleviate the TN attacks. My daily life is seriously suffering at this point. He finally agreed to prescribe two months of oxcarbazepin, 150mg x three per day.
It has been six days on this, and so far, it is not helping.
So, he never even looked at the paperwork I filled out, never listened to all my symptoms and my story, and never did any type of exam to check my balance, even though that is the one thing, aside from the face pain, that I mentioned specifically.
He then told me at the end of the appointment that I should be grateful I am young and healthy, and not like his usual patients who have alzheimers and ALS.
So, now I'm at a loss really, of what to do. I've been with my family dr for 16 years, and have always really liked him and respected his opinion. But two years ago he moved to a network of drs that I really do not like how things are run anymore. I called on Friday to ask for a referral to a different neurologist, but the only other two options they gave me are both in the same group as the one I saw.
Am I crazy to want another opinion? Is what that neuro saying really true, and it's not MS because the brain MRI was clear except for a couple of white spots (which he never even explained to me what those were). I guess after researching I was expecting a more thorough exam, him wanting to know all my symptoms and when they ocurred, and possibly more testing. Do I WANT more testing and more dr visits. No, really I don't. But if that's what it takes to figure out what is wrong with me, then yes, I will do it.
He seemed to have pretty much made up his mind about me before he even walked in the room.
So I guess now I may have to changed my primary/family dr, so that I can get a referral to a different neurologist.
Or just give up trying to find answers for now.....
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