Oh, I am so happy! After my AWFUL experience with the last neuro who wanted to take me off my seizure medication immediately because he was positive I was having migraines...I was really scared to see another neuro out here. After I told him my experience with the last neuro, my rheumy gave me a recommendation for one to see at another hospital. I had to wait a long time for my appointment and the rheumy gave me refills in the mean time, but the wait was well worth it!
This new neuro is AWESOME! He is one of those doctors that is very professional, but still such a normal human being. Has a sense of humor and everything
He did all the normal neuro stuff and went over my history of seizures and connective tissue disease and whatnot. I told him about the previous neuro I saw in order to be honest and give him the chance to agree with that guy, but he didn't. He definitely sided with my old neuro back at home in that the other guy was out of line to suggest taking me off medication immediately (amongst other things).
He taught me some things about my seizures that I didn't really know and he seemed very well-versed on seizures in terms of autoimmune connective tissue disease. He told me that seizure disorders are actually relatively common amongst people who have CTD and he agrees with the Mayo Clinic when they said that my seizure disorder showing up out of nowhere is likely stemming from the CTD itself. He said that any kind of seizure is possible in CTD patients, not just convulsive ones. I thought mine were all non-convulsive seizures, but he did tell me that there is one instance in my history that seems pretty textbook for a nocturnal tonic clonic seizure. Bummer! He told me I need to be aware of that for my own good and to let him know if any other events happen that are like that past one, suggestive of tonic clonic seizures. Oh, the bad neuro also had told me it wasn't possible for me to have seizures related to lupus because the only people that do have severely out of control disease activity and I would have crazy amounts of antibodies showing up or something. This neuro said that is very incorrect and that they've found seizures in all levels of disease...its just that some respond to anti-convulsant therapy while others do not. And those that do not tend to spiral out of control sometimes.
In the mean time, he is keeping me on all the same medication and just wants me to be aware of any auras that show up randomly. He explained to me that my auras are not just a random smell, but are actually a simple seizure within itself...so I need to tell him immediately if I start getting clusters of auras like I did in the late summer/early fall this past year. He wants to try and prevent anything from getting worse and sounds fairly proactive. He also gave me his email address, explaining that if I have any questions that aren't emergencies, I can always email him and he usually gets back to patients on the same day. Then he goes --
"But um...I mean, if its an emergency then you really need to call, okay? I don't want any of this 'Dr. _______, I think I'm having a seiz...iz...zzzzttt!!'" And then he proceeds to make a buzz jokingly like he's having an electrical short. Some might find that offensive or weird, but I found that it made me relate to him better because I like using humor more than anything else
Now the plan is that I get to wait 6 months for a follow-up unless my auras show up or I have any breakthrough seizures. Whee! He also gave me a ton of samples of my medication, which is awesome since it is expensive. Anyway...it was a good visit. So if anyone happens to need a great neuro in Seattle that is knowledgeable about seizures and lupus...let me know!
-kit
This new neuro is AWESOME! He is one of those doctors that is very professional, but still such a normal human being. Has a sense of humor and everything
He taught me some things about my seizures that I didn't really know and he seemed very well-versed on seizures in terms of autoimmune connective tissue disease. He told me that seizure disorders are actually relatively common amongst people who have CTD and he agrees with the Mayo Clinic when they said that my seizure disorder showing up out of nowhere is likely stemming from the CTD itself. He said that any kind of seizure is possible in CTD patients, not just convulsive ones. I thought mine were all non-convulsive seizures, but he did tell me that there is one instance in my history that seems pretty textbook for a nocturnal tonic clonic seizure. Bummer! He told me I need to be aware of that for my own good and to let him know if any other events happen that are like that past one, suggestive of tonic clonic seizures. Oh, the bad neuro also had told me it wasn't possible for me to have seizures related to lupus because the only people that do have severely out of control disease activity and I would have crazy amounts of antibodies showing up or something. This neuro said that is very incorrect and that they've found seizures in all levels of disease...its just that some respond to anti-convulsant therapy while others do not. And those that do not tend to spiral out of control sometimes.
In the mean time, he is keeping me on all the same medication and just wants me to be aware of any auras that show up randomly. He explained to me that my auras are not just a random smell, but are actually a simple seizure within itself...so I need to tell him immediately if I start getting clusters of auras like I did in the late summer/early fall this past year. He wants to try and prevent anything from getting worse and sounds fairly proactive. He also gave me his email address, explaining that if I have any questions that aren't emergencies, I can always email him and he usually gets back to patients on the same day. Then he goes --
"But um...I mean, if its an emergency then you really need to call, okay? I don't want any of this 'Dr. _______, I think I'm having a seiz...iz...zzzzttt!!'" And then he proceeds to make a buzz jokingly like he's having an electrical short. Some might find that offensive or weird, but I found that it made me relate to him better because I like using humor more than anything else
Now the plan is that I get to wait 6 months for a follow-up unless my auras show up or I have any breakthrough seizures. Whee! He also gave me a ton of samples of my medication, which is awesome since it is expensive. Anyway...it was a good visit. So if anyone happens to need a great neuro in Seattle that is knowledgeable about seizures and lupus...let me know!
-kit