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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POSITIVEPERSON

POSITIVEPERSON

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How many Drs have you seen for your seizure control? I have seen more than I care to count and was so
fed up in the end I switched to homeopathy.

Riva
 
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Well - that's not a fair question!

:(

If my ex-husband hadn't changed HMO's
like crazy, I would state I would have
had 3 Neurologists. But I don't want to
talk about Epi's right now.

Bernard and Birdy knows about that.
 
Sorry (((((((hugs)))))))) Didn't Mean To Bring Up Bad Memories!!!


(((((((((((hugs)))))))))))))
 
POSITIVEPERSON said:
Sorry (((((((hugs)))))))) Didn't Mean To Bring Up Bad Memories!!!

(((((((((((hugs)))))))))))))
Click to expand...

It's ok, I've had many Neuros that
I only saw once and heck, I don't
even remember what their name
was.

It's the 2 recent Epi's I had that
makes my skin crawl - Grrrrrrrr!
 
I added another option to the poll.
 
I've only seen 4 b/c 2 moved to the states(they're obviously just in it for the $$$)
3rd one was a jerk and wouldn't listen to me. (Positive Person knows what that's like)
4th one I'm with now and been with for 16 years.

Some ppl may disagree with me on this but more than 2 opinions is not necessary or if you keep changing Doctors all the time b/c you don't agree with him/her can be dangerous.
I say stick with one Neorologist so they can really get to know you and your case.
You'll get better care in the long run.

My 43 year old sister is a living example. She was first dx't when she was 13years old and b/c my mother took her to so many different Doctors, she was over medicated on so many diff. drugs and it caused serious brain damage.
She is now mentally retarded.

I blame my mother for this, it didn't have to go this way.
I was lucky and left the house and got married and started a family before she had a chance to screw me up.

Randy
 
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RanMan said:
I've only seen 4 b/c 2 moved to the states(they're obviously just in it for the $$$)
3rd one was a jerk and wouldn't listen to me. (Positive Person knows what that's like)
4th one I'm with now and been with for 16 years.

Some ppl may disagree with me on this but more than 2 opinions is not necessary or if you keep changing Doctors all the time b/c you don't agree with him/her can be dangerous.
I say stick with one Neorologist so they can really get to know you and your case.
You'll get better care in the long run.

My 43 year old sister is a living example. She was first dx't when she was 13years old and b/c my mother took her to so many different Doctors, she was over medicated on so many diff. drugs and it caused serious brain damage.
She is now mentally retarded.

I blame my mother for this, it didn't have to go this way.
I was lucky and left the house and got married and started a family before she had a chance to screw me up.

Randy
Click to expand...

Sorry to hear about that RanMan.

I've had to switch neurologists at least twice myself since moving to Manassas back in 96 but since I get my treatment & meds from a county run facility it's hard to even see the same physician from month to month so it's been a while since I've had any testing done.I just go in for refills as needed.

Now things have gotten a bit more complicated though as I've recently been prescribed Lexapro for depression & am currently in therapy for that....good lord can things around here get any worse? I certainly hope not.
 
Hi Mike,

Things can ALWAYS get worse.... however it's your job to make them better.

I started with a Neuro at age 12. He put me on Zorontin and then tegritol.
I then went to my family Dr., whom my mother (also with Epilepsy) was working for at the time. He helped my situation quite a bit. When I married Bern, we went through a string of Dr.s and the specialties were vast....
Herbs
Medicines
More medicines,
Biofeedback,
Neurofeedback,
NO MEDICINES (the Chinese Dr. who would pinch the living daylights out of me and charge me $100.00) She told me to stop driving. I did and then she took me off meds. I did that too. then my problem got worse...much worse. She did say it would get worse before it got better.
I went to see a couple of chiropractors claiming to help, and then a couple of family Dr.s whom we met and liked.
I also did a coffee enema (don't do it) and the caffiene from the coffee made my problem even worse. I have a VERY high sensitivity to caffiene now.
I've seen several neuros in passing at the hospital and a few others at their offices. One I did not care for at ALL, because he did not listed to what I had to say. He just said, "Try this. That will be $400.00 please for your first visit". Needless to say, our first visit was my last. I went back to my family Doc, and do most of my diagnosis myself. I've figured out the times and foods that make me most suseptible.

I just need to watch myself during those time periods and do what I've been doing to keep it at bay.... exercise, stretch, stay out of sugars, go to bed early, and watch the stress. I've been doing well lately.
 
Mike,

My mother and sister both take Lexapro. It seems to be helping them. But........ have you considered trying nutritional supplements to help with the depression? I have gotten so tired of drugs that I am always looking for alternatives. If you want to PM me, I will give you a list of what the book Prescription for Nutrional Healing advises for depression.

Blessed
25 mg. Zonegran
Homeopathy
Juvenile Myoclonic Epilepsy since 1982
 
One year of problems and too many doctors. Three ER visits at three different hospitals and those three doctors did not help. One GP following the first sz and he recommended a psychiatrist. One Gyno/Endo and she recommended birth control pills (and recommended an ER visit when I called after sz #3. One brain surgeon (recommended by the ER) who said the problem is 'too deep for surgery'. One endocrinologist at GW Hospital who saw blood readings which were not normal and prescribed Metformin. It's been about three months and my wife has only once said she heard a "noise" which precedes, but rarely precipitates, a seizure. I wish we could find a better pill, but we're very happy so far. One thing that seemed to accompany the seizure activity was extreeeme dryness (eyes, thirst, etc.).

I never counted doctors before this poll. I think it was #7 who prescribed Metformin. Maybe it's a lucky number, but it doesn't sound like my luck. Who will be #8? YOW
 
CuHead, I didn't see any neurologist or epileptologist in your list. I think you are seeing the wrong kind of doctor.
 
i FORGOT to list the one neurologist, saw her over a year ago.

We saw her twice following the first seizure. She looked at the EEG, MRI, and the Emergency Room X-ray. She would have prescribed something like Keppra if my wife had shown any interest. The ER had prescribed some very old, low cost epilepsy drug (I've forgotten the name) and my wife had taken a couple of those pills, but the pills affected her adversly (alertness and attitude). Down the toilet the pill$ went.
 
Sounds like the neuro was just one of those "let's try this drug and see what happens" types. Still, epilepsy isn't something that should be left to a GP, endocrinologist or whatever.

Most AEDs don't work like aspirins (ie. immediately after taking the dose). The metabolize into the blood stream slowly and it takes time to titrate the meds to the right level. It also takes time for the body to adjust/adapt to them. You need to give them a few weeks before passing judgement unless the side effects are too unbearable.
 
No. The neuro was serious. She saw no problems in the xray/eeg tests. She wanted my wife to gain 10kg and not stay thin like a supermodel. She seriously stated 'I don't know whether to prescribe this or not' (AED) because she saw no problems. I assume AED's do not heal polycystic ovaries. PCOS can be a killer (according to the doctor at GW Hospital) and I assume death is from seizure activity. As far as I know, PCOS is not epilepsy, but can lead to seizures.

.opinions only my own. .still learning.
 
Well, you got me there. I don't know anything about PCOS or it's relation to seizures. I guess I assumed that the seizure activity you referred to was epilepsy.
 
I had more than I can count. The most notable was Dr. Peter Lindstrom, Ingrid Bergman's ex-hubby. He was a neurosurgeon evaluating me to rule out a brain tumor (before mri's & ct's) while I was in Children's Hospital in San Francisco. My dad and both his parents had brain tumors. Luckily, I didn't.:yippee: My family doctor did me more good than all the neuros put together.
 
When I was 8 I begun with a neurologist until my epilepsy stopped when I was 13.
In 7 years it came back, but that doctor had moved to another city in the other side of the country.
We found his "boss" and he was very kind, he would not see me because he was a neuropediatric, but he gave us a name where we could go to, it was terrible, "the try this doctor" and he wanted me to take two drugs.
Then another one who was not so "bad", but it was expensive, then a young one of the hospital who made me the REM, and so on, every month I was with him, but the following year he was changed, then I had one neurologist who was not expert in epilepsy, he was many times in his office ( I could see him ) but he let his students to see me, some where good but some where terrible.
I had one of his students for some years, a woman very interested, I was in pregnance and had my baby while being with her, and also changed from Depakie to tegretol.
But one day she offerd me to go to the "best epileptologist"in the hospital, she introduced me a doctor who seemd very interested, he said "Montse, we will win epilepsy" and things like that, I felt like never before, but unfortunately it changed and he became a "try this doctor" and he saw me twice a year and a few minutes each time.
"Don't worry Montse, this girl is much worse than you"....and things like that.
When I got varicela I had a big seizure because the very high fever, I was in the hospital and my husband thougt it culod be a good idea to see him and ask him what to do with such a high fever. His answer was to take aspirin, we went to the chemist and she said that is not good at all to take aspirines if you are having varicela.
My husband wanted to go back to the hospital and "break his head":mad:he was very angry.
I did not let him go there and since then I am looking for a new doctor.
 
What a bunch of nincompoops! Is there an epilepsy foundation, association or similar patient advocacy group in Spain?
 
Yes, there are some associations, but they are not strong enough as yours. And most of them are with people who "want to be in the news", I mean "we need money to operate this baby....." and with that way of going many people think that all epileptic patients are having a great minusvalie, like the poor child who is in the magazine.
And others are very minority.
I was once in a meeting, and I was crying after seeing a girl who had lots of seizures per day, but she had another illness that makes them mental retarded.
When people see that, in their ignorance they think that we are all retarded or mad.
And I think that many people do not go because for any reason they would say that they are epileptics.
But there is a forum, that I am a member where people can be adviced and ask, they use to be people with children who are very worried because they never lived something like that, also Dravet and West patients.Adults who are pharmacorresistant,operated people....all epileptics are welcome.
My mother told me that perhaps it would be very sad to read this, but I am still there, and when I was ill with varicela many people phoned me:)
They are great, two weeks ago we had lunch together the ones that live near my city, and it was wonderful.
Imagine 12 epileptics together.
And reading, I found you and you are also great.
Perhaps one day we can meet, who knows.
 
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