New - introduction

[Schaps]

Hello- I have been diagnosed ( May 26 2014 ) with simple partial seizures originating from previous injury sustained as a result of HSV Encephalitis. This is possibly the most scary and depressing experience in my life. Although the seizures have not re-occurred since starting on lacosamide and Keppra my quality of life has been reduced to a living hell. As a physician I know too much


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[bighealey]

Hey Doc Welcome I am pretty new here also. It's going to be OK. The folks here are experienced.

 

[masterjen]

Hi, and welcome to CWE!
I am in the medical field as well, in audio-vestibular sciences, but currently on leave. It can be rough suddenly having your life and career shaken up by seizures. It's going on 4 years for me, and I am still adjusting and waiting for seizure control. Best of luck to you, and see you around the forums

 

[Belinda5000]

Schaps,
welcome to cwe and I'm sorry you have been dx'd with seizures,I was dx'd with sz's when I was 2years old.
Epilepsy can be depressing that I know and the meds also can depress you really bad.I've learned a lot from my neuro.But my quality of life hasn't reduced I 've never driven and I refuse to sit at home and wait for my next seizure I plan to live life to its fullest know matter weather I have a sz or not in public.

 

[Cint]

Welcome, Dr. Schaps,

We have another dr. on CWE, although he isn't as active now as he once was. He's a neurologist. Initially, living with epilepsy is a living hell, but it does get easier. My CP + TC seizures appeared out of nowhere over 30 years ago. Keep us informed.

 

[lindsayschu2]

I realize you know more about this than we do, but many of us have lived with this for most of our lives and have educated ourselves about this disorder (sometimes obsessively ). Whether you know a lot or a little, we all have had to adjust, make accommodations, and learn to fit this diagnosis into our lives. Sometimes it's not as difficult--for example, for those majority of people who are able to control it with meds. Sometimes it isn't as easy, which is the case for many of us who found this site. I hope you are able to control it with meds. Either way, it often gets easier after the difficult days of learning about the diagnosis, adjusting and figuring out how to fit it into your life. This may not be that helpful to you right now I realize. I'm sorry this happened to you and we are here.

 

[lindsayschu2]

It definitely can be that way, but I would caution against making that generalization. I'm nearly 50 and have had epilepsy most of my life. I've seen a lot of neurologists, some good and some bad--I've had some good ones who have been caring and have spent time listening, explaining and working to understand my case, though I will say that has been the exception. I'm sure lots of folks on here will chime in on their experiences. I'm now seeing an epileptologist and have found that has made a big difference, but I've seen two epileptologists in the past year and the doctor personality fit was an important differentiator for me.

 

[Ruth]

My origin outside of the USA was of a culture where physicians were esteemed because of their obvious compassionate and altruistic behaviour. This is not the case in the USA where health care provider Were it not for my direct intervention to insist on direct cooperation among the physicians involved in my care then my health would be compromised. I suspect that that is a reason why forums such as this exist.. to substitute for the care that physicians should be providing their patients.

Are you from India? My neurologist is from India and she is the best.

We are here to support and exchange ideas that work for each of us. The forum is not a substitute for a doctor. We cannot give medical advice.

Welcome,

This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

 

[lindsayschu2]

Ruth--I am confused by your post. Schaps has not come on here as a neurologist but as a newly diagnosed patient of neurology, and he / she has chosen to remain anonymous, coming here for support as everyone has. It would be best if we did not try to discover his or her identity, but I'm not sure that was your intent anyway, I'm kind of confused by your post. If possible, can you edit your response and remove what you have Googled to protect Schap's possible identity?

 

[lindsayschu2]

Schaps I don't think there is much verbal coordination between doctors, but my medical records are typically shared. Often, epileptologists do require a referral from your neurologist or primary care physician, and they will require your medical records. Medical records here are very complete, and will have a lot of information that the epileptologist can use to get background on your case. The epileptologist will send their findings from the visit back to your neurologist or primary physician. I don't know how much verbal communication goes back and forth, and I suspect that is highly individual based on the doctors in question. Many of us on here have found that we become our own advocates, learn as much as possible about epilepsy and treatments, and get involved in our own care. Ideal? No. But being involved and assertive about our care is helpful in assuring we receive adequate care. We also are willing to seek out different doctors if we feel we aren't getting good care from our current doctors.

 

[Bernard]

Hi Schaps, welcome to CWE. :hello:

... it never ceases to amaze me how uncaring most physicians are. ...

http://www.coping-with-epilepsy.com/forums/f27/my-epileptologist-neurologist-969/

... I suspect that that is a reason why forums such as this exist.. to substitute for the care that physicians should be providing their patients.

http://www.coping-with-epilepsy.com/forums/f23/what-ive-learned-e-patients-607/

... I have trained in three continents and am multi specialty qualified. I am wiling to share via pm if needed

All CWE members presenting themselves as a medical doctor to the community need to send me a PM/email to confirm it or cease the claims.

 

[Bernard]

I will cease claims to the effect that i am a doctor.

As you wish.

Any posts will avoid medical information.

Medical info is fine. Medical advice is not.

There is no way that I need to confirm my professional status to anyone on a public forum.

I'm the owner of this forum. Consider this forum as a dinner party at my home. As the host, I take reasonable steps to ensure the safety of my guests.

... I can claim to be ANYONE and ...

It's not that hard to establish your real identity and status if you want to. You are welcome to send me an email or PM if you change your mind.

~~~

Sorry you didn't find the threads linked in my previous post to be of interest.