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2nd Opinion & 2nd Guessing

Sat, 07/26/2014 - 00:44

On December 31, 2013 I was told that I have epilepsy.  Since then I've been on Keppra, Vimpat and now Onfi.  I stayed on the Keppra but completely lost interest in sex and my ability to peak, the vimpat caused jaudice and the Onfi makes me so unbalanced that I have a hard time moving from point A to B.  For the first time since being diagnosed, I'm afraid.  

We believe that this was all caused by after a minor car accident where I took a good shot to my head.  Finally, after continually getting worse (or at least feeling worse), I applied for a reasonable accommodation from my job.  They requested further medical documentation.  When I took the RA list to my doctor, she suggested that they hospitalize me for 3-5 days to gather the medical information requested.

Quite frankly, I'm glad they are re-checking me.  I changed neurologists after the first one refused to answer any questions about my condition without a written list of questions, rushed me out of his office, etc.  I found an epilepsy center through the Epilepsy Foundation with a specialist so I feel much more comfortable with her.

So here's the thing, I'm worried about the visit.  I was out of work for 6 months after the accident until they figured out what was going on with me.  What if I don't have any seizures in the 5 days?  They're going to think I'm nuts and I'll be so upset over the time and money I've lost on these meds.  They'll have to go back to the beginning to try to figure out still what's going on with me and my primary has suggested that it was stress.  I don't know exactly what kind of epilepsy I'm supposed to have.  One minute I'm fine, the next I completely collapse and I can't function for several hours.  Sometimes afterwards all I can do is sleep.  My balance is really bad and I have to carry a cane all the time right now.  Sometimes walking a short distance seems like so far to me.  Sometimes I get incredibly silly and almost anything might come out of my mouth.  Concentration is a challege at times.  Even when I feel fine, communication is sometimes bad.  My words are slurred sometimes (people in my office come to check on me now) and I sometimes get my words jumbled.  On the other hand, the periods of extreme dizziness and disorientation have passed (I haven't had one since the drugs started), my face isn't numb anymore at all (only one incident in the past few months).  As long as I'm careful, I hardly walk into anything anymore.

i feel ungrateful that I am basically asking for a second opinion, scared that we'll have to start the testing process all over again and a little anxious. Am i imagining things? Do I need a shrink?  I'm a control freak but right now I have no control.  Is thinking I don't have epilepsy wishful thinking on my part.  I'll be glad when this whole thing is over and resolved and I have real answers.

Comments

If I had the symptoms you

Submitted by Anonymous on Sat, 2014-07-26 - 03:30
If I had the symptoms you write about, I sure would want to know what is going on, seizures or something else.  A diagnosis can be incorrect so rechecking it sounds like a way to improving things (guess that makes me an optimist this moment, isn't always so, medical issues can flare up and affect anyone's resiliency). Second opinions are good for complex issues and feeling out of control is normal when there are unknown medical issues. I get back some control by learning what I can. You might start with what you can find out about your earlier testing and clinic visits. You can get a copy of the records from that initial doctor, I'd be curious what is there given how oddly that doc acted (they can charge you something for the copies, nothing excessive but see if they have a policy somewhere).  You should be able to get any previous EEG or radiology summaries from where ever those were done.  I hope your post gets lots of responses, knowing you aren't alone and that your reactions are very normal might help you regain some emotional cushion.

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