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Newly diagnosed by the Mayo Clinic
Thu, 12/28/2006 - 17:30Topic: New to Epilepsy.com
Hello Everyone,
I just joined the group about 5 minutes ago and have just been newly diagnosed with Epilesy. It has been a LONG 9 month journey from being dianosed with vasovagal syncope and hypoglycemia. I have been checked for adrenal failure, Lymes Disease, Addisons disease (one neuro saw a small "spot" on my MRI and said it could possibly be a brain tumor, the beginning of MS or Lupus...needless to say I am not seeing this neuro anymore). I now have had 3 neurologists, 3 cardiologists and 2 endocinologists. Fortunately, I finally got to the Mayo Clinic in Jacksonville and have a great team of doctors. Almost 2 weeks ago I was put on Lamictal, which seems to be doing okay. Although, today I woke up and discovered what could be a rash. I could just be paranoid or it could have been my jogging clothes chafing me...I will keep a look out.
I am interested to talk with anyone about our similar condition. I am 36, live in Florida am a wife and mother to a 7 year old girl, a 4 year old son and a 1 year old puppy "Bella".
Take care,
Kristin
Comments
Re: Newly diagnosed by the Mayo Clinic
Submitted by HeatherBanz on Fri, 2006-12-29 - 11:40
Hi Kristin!
Thank God someone finally diagnosed you. I can't imagine how difficult it has been for you. I am 38 years old and was diagnosed with Epilepsy in 2002. My seizures only occured in my sleep. My first neurologist wrote my seizures off as a one time thing. After that i went on WebMD and located another neurologist who looked at my MRI and CT Scan and immediately diagnosed me with epilepsy. I was floored by this since the seizures just appeared one night. And no one in my immediate family has epilepsy. Or atleast no one ever discussed it. I have been taking Lamictal for 4 years now and consider it a wonder drug. My side effects consisted of dizziness and confusion but subsided after my neurologist found the right amount (250 ml twice a day). Unfortunately that took several months and several blood tests. I was never so depressed in my life than during that time period. Well until i was diagnosed with melanoma but that is a whole different story and i am happy to report that i survived that too.
Please know that there are success stories out there where the drugs have worked. You are not alone. Please feel free to contact me.
Sincerely,
Heather
Re: Re: Newly diagnosed by the Mayo Clinic
Submitted by Knailos on Fri, 2006-12-29 - 18:10
Hi Heather,
Thank you for your comments...it gives me hope. I too am on Lamictal but I am really getting nervous as my neuro. said a serious side effect can be a rash and if it gets severe you have to be taken off the meds. (apparently it can be quite serious and may include a hospital stay...I don't need anymore of those). This morning it looked better then yesterday but today after work it looks a little worse. I have looked on line about the rash and saw some pics. that looked horrible (sometimes the internet is not a good thing!!). Mine does not look anything like them so I am hopeful that it is just mild and will go away because so far for the 2 weeks I've been on the meds. I have been seizure free with no side effects). I put a call in to my doctor at the Mayo haven't heard back so I am assuming if it was an emergency I would have heard. Have you ever had any reaction to Lamictal? I am sorry to hear about the melanoma but I am happy so hear you are a survivor.
Also, another interesting thing, my younger brother had 3 seizures when he was 13 (22 years ago), he was put on Dilantin for a year and has never had a seizure since!
Take care and have a safe and happy New Year,
Kristin
Re: Newly diagnosed by the Mayo Clinic
Submitted by pfincher on Tue, 2011-12-27 - 13:34
Hi, I have had complex partial seizures since I was 20 (now 42). I have heard great things about the Mayo Clinics. It sounds like you are in good hands. I am looking into them for my seizures as my local Epileptologist recommended the Rochester (for surgery). I am considering the Jacksonville facility as it is alot closer and easier for my wife to join me there. Did you get referred to Jacksonville? We are all here for you! Paul in Tampa