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epileptologist referral?

Thu, 07/06/2006 - 13:36
Ok, I write to you in desperation. I was recently taken off of Keppra by my neurologist, who decided that I am not having seizures because I had a normal EEG and MRI. Although I am apparently having the most obscure, psychedelic "anxiety attacks" in recorded history, that is what he decided they are. They took me off Keppra a few weeks ago, and I'm right back down the rabbit hole. I've been having episodes/simple partial seizures/whatever for the past three days, and they are terrifying. I have done oodles and oodles of research on my own, and while my neurologist makes me feel this way, I want to make it very clear that I am not indulging in some sort of weird hypochondria and pushing for an unwarranted diagnosis of seizures--it is just that TLE is the one and only thing that explains my symptoms, far FAR more so than any other condition I've researched. Because of all of this, I would like to get a second opinion. I am desperate for help, and the general practiticioner and neurologist I am seeing are not giving me that help. I live in a small town in Upper Michigan, and my local options are exhausted. Has anyone had positive experiences with a neurologist, epileptologist, or neuropsychologist in the state of Michigan or in Wisconsin that they would be willing to share? Despite repeatedly being made to feel like a raving hypochondriac, I am convinced that I need to talk to someone with more experience and expertise in the area of epilepsy, in particular temporal lobe epilepsy. If anyone out there has a name and/or contact info for a doctor that fits this description, please please please either respond here, or e-mail me directly at gingeraleafternoon@gmail.com. If you have no miracle physician for me, that's ok--thanks for listening anyway!

Comments

Re: epileptologist referral?

Submitted by fzMousie on Thu, 2006-07-06 - 13:56
How awful for you. Any neurologist should know that a normal EEG means nothing. In fact, that was the first thing that my neurologist told me. He said (and I quote): We don't really care about your tests results. They don't tell me anything. It's normal for someone with this type of epilepsy to have a normal EEG. We don't care about your MRI results, because all they tell me is that there isn't a cause. He then proceeded to fire off things from my results very quickly and informed me that all my symptoms were indicative of a Simple and Complex Partial Seizure disorder. He was a very upbeat, funny guy. Unfortunately, he is in Canada. My family doctor almost brushed me off and I demanded to know that if nothing was going on, what was happening to me! That is when he sent me to the neurologist. You know you, Heidi. You know when something is not right. You have every right to demand an answer. (hugs) Unfortunately, I have no suggestions regarding whom you should demand that answer from. Perhaps you should insist on getting a referral to a new neurologist.

Re: epileptologist referral?

Submitted by Anonymous on Thu, 2006-07-06 - 14:10
Hi Heidi, Epileptologists, or neurologists who specialize in epilepsy, are definitely the ones to see when questions arise about diagnosis and treatment options. There are many available in your area. If you use the 'Find a Doctor' link on epilepsy.com, it will take you to the database of the American Epilepsy Society and you can look by state or by name. Or you can access the database of the National Association of Epilepsy Centers to find comprehensive epilepsy programs in your area. Let us know if any problems!

Take care,

Epilepsy.com Resource Sepecialist Here is the link -

Take care,

Epilepsy.com Resource Sepecialist Here is the link -

Re: epileptologist referral?

Submitted by jamieb5210 on Tue, 2006-07-11 - 13:56
Hi Heidi, I live in Michigan and see Dr. Daniel Freeman in Jackson, just south of Lansing. I know for sure he is a neurologist and I believe he is an epileptologist. He sees more epilpsy patients in Michigan than all of the neurologists in Michigan combined - so says those who have referred me. He also regularly consults with 3 of the most prominent epileptologists in the US - I wish I knew their names, but I don't. Either way, he is an excellent dr, generous, kind, and very good at what he does. If you need more info I can get it for you. Take care, Jamie

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