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PLEASE HELP What's the next step?
Fri, 11/24/2006 - 13:37Hello everyone! This is all new to me so please understand that I have alot of questions. I went to my neuro this week and he told me that my jerks that I've had all of my life are Myoclonic sz's. I use to jerk about once every 2 weeks but now I do it up to 16 to 20 times a day. What is causing this? Will I someday have the big GM? I had an EEG this week with no results yet.
My sister is a nurse and she told me yesterday that I better be careful of what I tell my Dr., he could take away my (GA)DL. She said that if I'm just exploring the fact that I have these jerks they could really cause me trouble. If I could live with them (jerks) and they don't interfere with my everyday life just reduce the triggers and deal with them.
I'm really scared, here is what I do:
It affects my upper body. My head will usually move from side to side (ear to shoulder) and I'll have like a shiver go down my spine. My hands usually move too and I make a sound (now) like I'm being steped on.
It's kind of like a dog shaking water off, I'll start at my head and everything will move head, soulders, arms, and stop at my waist.
Does anyone else have this? I also have times when I want to stare while I'm driving, but I'm in full control.
Should I still go to the Dr. and follow up or just forget the whole thing? I haven't read of anyone yet that has had my symptoms.
I broke a glass the other day at work, and that is what made me go to the DR.
PLEASE HELP ME!!!!
Comments
Re: Re: Re: Hi Mary. I'm really sorry to
Submitted by Mary G. on Fri, 2006-12-01 - 21:43
Thanks Happycat and all the others that have helped me! I have now been told that my first EEG has come back normal (after 2 weeks later) and now the Neruo wants to do a 24 Hour EEG starting Monday! Makes me think that he might have found something funny about the first EEG. Well I'll go Monday and have this EEG. I called this tech at the hospital and she said that they will hook up the electrodes (sp) to my head and wrap my head up and I should wear a scarf or a hat; then I have to go to my neuro's appointment 30 mins. later. Boy what a busy day!!! I'm a hairdresser, what a change!!!
Maybe this will show something. I've been trying to keep a log on how much and how many sz's I've been having. How many headaches I've been having and the ringing in my ears etc.
Maybe just a hard week? Well just 1 day at a time right?
Thanks Mary. I know you
Submitted by happycat2 on Sat, 2006-12-02 - 17:31
Thanks Mary.
I know you wanted answers — and all I gave were possible answers ... It might take awhile to figure out what is happening and how to fix it. Let us know what you plan to do won't you..... Keep us updated while remembering and considering ... Change is scary but sometimes necessary. That can be tough, and we cannot and don't have to let that get in the way of treatment.… It's better than the uncertainty of the unknown. Speaking for myself, I do think that the doctor-patient relationship carries responsibility and needs to be treated as such.
I don't mean that means not just saying what you think the doc wants to hear... Something your sister needs to realize is it pays to be honest with the doctor or neuro. ... Even if she does believe what she thinks you have now and stand to loose is better than the uncertainty of the unknown.... It means thinking about things before you go in for a visit, being organized by keeping a seizure (or migraine) log, and keeping that safe.... I know I know, people with epilepsy are supposed to successful and have productive lives. As I know meds can really work wonders.
God knows at times it just seems finding the right med can be more than learning about art or science..... I find that to be so, as I do reading the links and posts on here help.....You can learn a lot just by reading the thoughts of others. I have. I think support boards are wonderful for that. We need to be so be patient and keep reading and most importantly keep enjoying life ... So slow down, be less busy, make time to take a walk. Taking one day at a time sounds good...Hang in there. Stay positive and upbeat.
Cat.
"Many false prophets are gone out into the world." 1 John 4:1
Re: Re: Hi Mary. I'm really sorry to
Submitted by happycat2 on Thu, 2006-11-30 - 21:37
Hang in there MaryG... Hang in there and keep us posted how it goes. A wise decision you are taking. Sometimes the picture can be bigger than we want, or want to handle. Sometimes we want it and cannot get it! LOL ... That really is overwhelming when that happens. You really need to take it one day at a time then ... Take a deep breathe try and relax, stay positive and upbeat when you cut down on the triggers. That helps. Most of all what would help is send the sister of yours a message to check hers and ask her were in the world she's coming from in what she's saying. She's giving one view, and you really need more than one to gain understanding to realize what happened. You know how it goes..... She needs to know how it goes.. That you are paying a high price balancing your cheque book on the issue of driving... Here are a couple of links on why the need for cutting down on your seizure triggers that could be handy to share with her... Cat. Learn about how triggers can cause a seizure, read a list of common seizure triggers, and find information about the cause of febrile seizures. www.trileptal.com/info/understanding/seizuretriggers.jsp http://www.epilepsy.com/epilepsy/provoke_seizure.html http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Personal+Care+&+Safety "Many false prophets are gone out into the world." 1 John 4:1