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Focal Epilepsi need New Neurologist in WI

Sat, 09/16/2006 - 21:49
Hello All: I live In Milwaukee, WI. I have been diagonosed with Focal Epilepsi in 1999. I also suffer from Hydrocephalus, Aarnold Chiari malformation,a Brain Cyst and permanent nerve damage from years of undiagonosed siezures and hydrocephalus which I have had 9 brain surgeries for since August of 1998. I 2 codeman programmable shunts. I also suffer from Anxiety Attacks/ Panic attacks, which I suffered for over 2 years before making myself recognize there WAS a PROBLEM! ha! I also Have Jesse my Belgin Malinois, he is my siezure alert dog. I had one previous siezure alert dog who passed away at 13.5 years old 1.5 years ago. He was also a Belgin crossed with a German Sheperd. My previous dog Willy could not alert me before my siezures but would stay with me, or get help during and keep me steady. I have very limited balance. My current dog Jesse has NEVER been wrong, he has been able to alert me to my siezures up to 3 days in advance since he was 2 days shy of 6weeks old. I also suffer from Restless Legs Syndrome. My current Siezure medication is: Clonzapam 0.5 times 2. I have been on Increased levels of Trileptal until I told the Neurologist NO WAY, I have to live my life, I have been denied benefits from SSI 2 times. Since I don't have children I do not qualify for any other medical assistance. I have been on Carbazepine which did not control my siezures. I have been Prescribed Depakote, but refused to take it when I found out that it is too recognized at an "anti depressant" and I take Zoloft daily from 150 down to 100 over 3 years. Also refused because I was told I would have to come in for routine blood testing to make sure my liver is functioning every 6 weeks or so. I have exhausted the neuro dept at Freodert Memorial Luthern Hospital. I have been told by 2 different neuros that I have Focal siezures and "siezure disorder" but then my Women's Epilepsi neuro transferred from Freodert to Harvard? Medical, so her replacement was a man, who took one look at my chart, looked at me and said you don't need to see me you don't have siezures! i'm not expecting to see you in here again. I have experienced an arrogant attitude among neuros, I have a NS but he only deals with my shunts. In April of 2000, I had a broken shunt, got a staph infection, was in the hospital for 2 weeks during 2nd surgery that week to implant new shunt had a Rapid fire siezure which caused me to lose my short term memory, all of my speech and more of my gait/ balance. I have since gained back my Speech thru therapy, did speech, occupational, and physical. So Now I'm unemployed due to downsizing, I'm a preK-4K teacher. I attend all interviews w/o my service/ siezure alert dog because although it's illegal to "not hire" me b/c of him, in my field and many others administrators will think of ways or reasons I am not a good fit. My current dog just turned 2 at the end of May, and probably won't be ready for a classroom for another 6 to 9 months. I am looking for anyone who has suggestions on finding a Women's epilepsi neurologist. Currently the Clonazapam seems to be losing some of it's effectiveness. For me the siezures are exhausting, nausiating and exchruiating painfully horrible. The medication cuts down the amt I have typically in a 6 month period or so, but can be increased if I am stressed out, exciercise too much, walk too far, take the stairs, stand for too long, or am overtired. Afterwards I'm exhausted for days and have persistent muscle pain behind my knee on my left side extending to my thigh and calf. Thankyou for your Suggestions! Sugaahshock

Comments

Re: Focal Epilepsi need New Neurologist in WI

Submitted by rosegirl on Tue, 2006-10-10 - 01:48
I was just shocked at what you have been through. I don't think that I would be able to handle that. You are definitely one of the strongest people I have ever heard of. When I was reading your posting i realized that we might've had the same female neuro and have had to deal with the same arrogant male neuro. I'm sorry, I just wrote to tell about that. I'm also looking to switch neuros but nothing seems like a good fit. I wish I had my old one back. :(

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