How many Drs have you seen?

How many Drs have you seen for your seizure control

  • 1-2 Drs

    Votes: 52 25.1%

  • 3-4 Drs

    Votes: 66 31.9%

  • Went to Mayo clinic

    Votes: 5 2.4%

  • Went to John Hopkins

    Votes: 2 1.0%

  • More than 4 Drs

    Votes: 82 39.6%
  • Total voters
    207

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stilldancing_98 said:
Hey CQ, my sons great gramma is from Australia. She calls him Master Alexander. lol. I love her. She has my Birthday to.
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Hey Still dancing
That's so cool about your sons great gramma being an Aussie. Do you have trouble understanding the Aussie accent?

My Mum & I have a friend in America who we've become pretty close with over the years & I call her my adopted American Mum lol. When she 1st spoke to us on the phone she had no idea what we were saying because of our 'crazy accent' lmao.
I love joking with my American friend about how different things are over to what they are in America (the food we have, way we pronounce things) lol.
 
well....if you are counting all of the neuros i have seen on my various trips to the hosipital.... its more like 5-6 but 3 on a regular basis because there is my regular one that i see all of the time at Heath Central Hospital which is the hospital that I used to live near. Dr Shar that I see when I am admitted to now because it is across the street to where I live now If I have to go now if I go into status and they admit me at Celebration Hospital.They do talk to my regular neuro. The first Neuro I saw was a complete crackpot he had no idea what he was talking about.... and he tried to charge me a co-pay 5 times!
 
We started out with an neurologist in the Asian country where we were living at the time. But she prescribed medication that wasn't appropriate for a baby, which didn't give us a lot of confidence.

We came to the U.S. to see a 2nd neurologist. Worked with her for several months, then returned to Asia. The medication she prescribed didn't work. And we didn't like the way we had to wait for hours to see her, even with an appointment.

So we then flew to Bangkok to see a 3rd neurologist. He got the seizures stopped for 3 1/2 years.

We happened to be back in the U.S. when son started having seizures again. So, we took him to neurologist #4, at a hospital that has since become part of Johns Hopkins. She worked with us on 3 different meds, none of which worked, and then we got him on the Ketogenic diet.

His seizures stopped on the Ketogenic diet, but then that doctor increased his Depakote level -- not because he was having seizures, but because blood test showed he was below therapeutic levels. This sent him into a tailspin -- no seizures, but he got horribly affected -- crying all the time, lost all the language he had just regained, and worse of all, it started to damage his liver.

So, his neurologist referred him to doctor #5, an Epileptologist, also with Johns Hopkins. This doctor weaned him off Depakote and just kept him on the ketogenic diet.

We returned to Asia, and back to doctor #3 (neurologist), and also doctor #6, who specializes in the Ketogenic diet, since doctor #3 isn't so familiar with it. So, now we work with doctor #3 and doctor #6, and they consult with doctor #5 via email.
 
I have seen a dozen doctors most likely.Especially since I live a 15 minute drive from Emory.
These are docs I've seen in my adult years not when I was a teenager.
I've seen some of the best in the country.
 
3. One I was with for 4 years went through diagnosis and surgery with her. She quit her practice. The next one I saw twice over a year but she ended up moving to Texas. My new doc is a guy. But I've only seen him once so far, the next time is in August. He's helping me get off the keppra. Not sure about him yet. He seems a bit distant.
 
I have been seeing the current nuero for about 4 years now I see him about 2 times a year although lately i have been seeing him more frequently due to the fact that we have found some actual seizure activity on my last EEG so we are trying to pin point my treatment plan now so i have seen him like 3 times in the last 3 months i have an ambuatory EEG on the 19th of May for 24hrs hopefully we will see activity on this on as well it is on not on the week of my period though which is when most of my activity is related. it is the week after. He is the 3rd one I have seen in 5 years.

Tina
 
Since I was diagnosed, I have had two primary, 8 consulting, and five neuro surgeons, and in three weeks, I am going back up to LA to have another consultation.
 
Mmmmm,including nueros and local gp's defo double figures,who all it seems have different ideas about whats going on.Im sure the best doc is yourself you know your body,you know your epilepsy better than most docs flying round the block.
 
Four neurologists (one at Mayo), one epileptologist, and then I quit. I had had it.
 
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Nine - lived 7 different places, 8 was because of doctor office changes, 9 was because of insurance change.
 
Yeah, i've lost count too. They keep either retiring or dying. If they would give me a young one I might get them to last a while.
 
My doctor is amazing. He is a scholar. I even have his phone number incase I have a major episode after hours. He keeps tabs on me like I was his own family member. The entire office is like family. I cant imagine sharing my brain with a different person.
 
I've seen at least 8 Drs. or more over the 44 yrs. I've had epilepsy. Either the Drs. didn't want to deal with my case because it was to hard or they retired. Wishing you well and May God Bless You!

Sue
 
I'm searching for a new doc. Alex needs a new doc because he is 18. I do not trust any one. And my dr. Resined help
 
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