HI from Michigan!

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Hi, Kathy,

How's it going? What brings you to CWE??? I'm sure you're going to find it quite interesting and fun here. :)
 
Hi

I stumbled onto your site in googling epilepsy. I was diagnosed last year... I have Complex partial status epilepticus. I suffered a head injury 4 years ago, but was only just diagnosed this past Christmas. I am not receiving medications or treatment currently as I am having a VERY hard time finding a doctor cares enough to give me a second glance...sigh. I have my seizures every 19-22 days. They follow a very specific pattern, and when they hit, I have around 30 in a 24 hour span. I then spend 2-3 more days in bed very sore, fatigued and weak after they are done. I came to this site in hopes of meeting others like myself. I dont have any friends that have Epilepsy, and my family cant seem to connect with me either,...as they dont understand the severity of my illness.
I feel alot like i am just "complaining" about being sick..but I just cant help it. I feel sick all the time..and even when the big ones arent here,.my brain is always actively in seizure mode. I try to work around being sick, but depression is starting to take over....I feel lost...and need help :(
Thats what brings me to this site....Hope !!

xoxo
 
Welcome! This site will definitely give you the support and information you are looking for. I've been on here only a few days but everyone has been so helpful and friendly. It feels good to talk to people who get it! :)
 
Hi back to Michigan from Ohio!

:cheers:

Welcome to our little home. Yes, I think you will find hope here. At the very least, you will find others facing similar challenges and draw strength from leaning on each other.

:cheers:
 
Hi there!!!! You're not too far from me. I live in Vandercook Lake. (Or maybe I should say I live beside Vandercook Lake.)
 
My neurologist is at Greater Ann Arbor Neurology Associates. They work out of "St. Joe's" but they have an office on the corner of 1-94 and Ann Arbor/Saline rd exit. In addition, I know a biofeedback practitioner that is also in Ann Arbor (close to the U of M stadium/Crisler arena).
If I can help - let me know. You will find that MANY people with either epilepsy or some other condition that requires a neurologist are not pleased with the choices that we have in the Jackson area. (I won't mention the physician's name in an open forum. However, I know for a fact that even other physicians don't like him because I have a family member who works at the local hospital in an administrative position). Most of us seek medical treatment east of Jackson in the Ann Arbor area if we can.
 
Welcome Michigan...I'm from Wisconsin and a new member also. It does help to be able to "speak" with people who really know how we feel about our disorder. Often times friends and family just don't get it because they don't have it...they don't feel the depression that comes with this disease...doesn't mean they don't love us...they just haven't experienced things we have...
 
Greater Ann Arbor was my 3rd and 4th neurologists,,and the diagnosed me with "silent Migraines"...not sure what that is, but my type of epilepsy is so deep in my brain, that they had to do an extended video eeg for it to show up..which it did. Fortunately I was out at the U of M for an entire week and during that time, had seizures, over 30 of them, and they were able to document and diagnose me. The trouble there, is that they are so overbooked with patients, that my next appt is not until the end of the year (November), which I find unacceptable since my meds arent working and I have nasty side effects from them..which I did explain to them.
I had a doctor from the U call me, who isnt even my doctor, and he told me that my seizures wont kill me, to stop taking the meds, and basically suck it up until November.. I think this is a terrible way to handle patients. I need a doctor that has time for me, will look into my case long enough to see that I need help, as I have seizures every 19 days, and when they start I get over 30 in a 24 hour span, and cares enough to follow up with me. This seem to be nearly impossible to find..
im trying Henry Ford Hospital next.
thanks for your response...its so nice to not feel so alone anymore :)
 
I understand what its like to have trouble finding a doctor who will take the time to not only listen to what you have to say but actually treat you. I hate when doctors dismiss your seizures like they are nothing, its not NOTHING. if they knew what its like to have E just for a day than they would not be making those types of comments. Just because the lines appear to be small on an EEG doesn't make it insignificant. I once told a doctor that said my seizures were nothing more than migraines with auras and I told him well, if you had to live with those "migraines" day in and day out you would not be dismissing them so quickly, you would want it to be treated. His silence meant I proved my point. It is also bad that there are so many doctors out there who are like that, this causes us to change doctors several times because we deserve better care then ssd and other doctors assume we are "doctor shopping" which is not the case. We just deserve better care than what we get. :twocents:
 
I too go to u of m about every 6 months as it is a teaching hospital and as such they change residants once a year.they all work under a staff doctor who comes in to talk to you.as any where else you have good&bad doctors.the one I had at fords thought he was king of doctors so I will not go back. I have been helped at u of m but as you say it does take a long to get in. that is one of the draw backs good luck hope you find a doctor right for you.
 
I had a doctor from the U call me, who isnt even my doctor, and he told me that my seizures wont kill me, to stop taking the meds, and basically suck it up until November.
Click to expand...

That's terrible! Makes me wish a seizure disorder on him so he would learn exactly what it feels like.
 
I have heard the same issues with U of M (overbooked).
I'm not certain about any assistance from the Lansing area. MSU also has medical schooling. It was many years ago but I did use a neurologist out of MSU.
You still may want to consider neurofeedback treatments as well.
I can't imagine any medical "professional" making such comments with respect to simply stop taking your Rx's and "suck it up" until November. It makes me wonder why more people don't go "postal" in these medical establishments.
 
Nakamova Why would you a moderator wish that on any one. epilepsy is something that no one should be cursed with.Just because they are doctors does not mean that they care, you find this in all walks of life.There was a cop in Ann Arbor who had lung cancer and told a repoter that he did not deserve cancer because he did not SMOKE and only the ones who did should get it.A jerk,is a jerk,is a jerk who ever or what ever they are.By wishing that on some one else that makes you as bad as them.
 
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