Changing Doctors

Posted by lsittll @lsittll, Oct 26, 2021

How often do we see our doctor for the first time and like them then but thereafter we find that is not for me. Vice versa occurs. I went to my epileptologist for the first time and couldn't stand her. She changed thereafter and became my favorite doctor because of how he has always worked with me in my plan of treatment. But that seems to be changing and so is she. She is so adamant that the VNS is an added form of medication and that it is a good one. But not all medications work for everyone. There is no proof that the VNS has never worked for me in the 21 years I have had it. She still insists the battery be replaced. The other week the nurse called that the doctor wanted me to go in to have the battery checked. I told her I must pay nearly $1,000 in copays to have the battery replaced. Have you seen a social worker? When was your lasts seizure? 2-3 months. Okay I'll tell the doctor this and have the assistant call and schedule an appointment. The secretary could somehow sense that I wanted to let the battery die and so she made no appointment. The nurse called the next day. I have never returned the call. This is too much unneeded stress. Fortunately my seizures have handled it. But for how long? I am most uncomfortable with using the VNS. She has added Zonisamide and it has miraculously decreased my seizures Because my MD has wanted me to be comfortable with my treatment if I tell her this she will back off. If not somehow I will have to tell her some sort of change is needed. I do not want to change doctors. My social worker will not get involved in this. She isn't knowledgeable about it either. You are the ones that have the knowledge and I respect your comments.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

@lsittll

Hello @jakedduck1 I will call the nurse tomorrow and ask her to relay the message to my doctor that this is causing me unneeded stress. I will request an increase in the dose of my Zonisamide to offset the stress that this is causing. I will tell her to call the psychiatric nurse practitioner if she has any questions. The psychiatric nurse practitioner told me today to do this.
If an increased dose of Zonisamide would even create better control than a seizure every 2 or 3 months I could really prove the doctor wrong! Yoo Hoo!

Take care,
Laurie

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Hello Jake! The doctor's nurse returned my call today. She was very unexpectedly calm. She said so you do not have to have the battery replaced. I said all this has been very stressful for me. She couldn't understand why. I asked for the increase in Zonisamide to offset the stress. Let's hope I get a call from the nurse that the neurologist has okayed my request.

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In reply to @jakedduck1 "@is" + (show)
@jakedduck1

@jakedduck
Jake
I've been thinking on this matter VERY clearly and I don't think it is worth paying out-of-network fees to see her anymore. I saw her because initially she worked with me putting me on medicines that I was comfortable taking. When I told her that I went through a life threatening experience because of a side effect of a new medicine she said "you don't need to go through that again." She only put me on things like Tegretol.

Now that my seizures are under such good control - it's been 4 months since I've had a seizure. if I see another doctor he/she in all likelihood would just increase the Zonisamide and not add a different medicine. At least that is my reasoning. I'd see an in-network doctor, I've already looked up some. The best doctor is not always the best. The older ones do not necessarily have the best knowledge either.

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@santosha

@lsittll
Hi Laurie, Good Morning
I have just watched this video S.T.E.P.S. - A Discussion Guide for Patients With Epilepsy and Their Doctors on STEPS video library. I remembered you!
https://www.stepstowardzero.com/#why-steps
As shown through a survey, there is a clear disconnect in the conversations people are having with their doctors.
Have a nice weekend!
Santosha

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Hello @sanatosha!

Thank you for thinking of me. I must change at this point whether I want to or not. There are things that obviously are not documented clearly in my medical record because the nurse could not find these things in my records. She's no good doctor I had to call the neurologist's nurses line two days ago because of a horrible unusual type of aura. I haven't heard back. That was two days ago. The nurse was very rude when she said so you won't have the battery replaced. She was even more rude when she said WHY? in response to me saying the matter has been so stressful. There must be good communication between all parties.

@lsittll

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@lsittll

Hello @sanatosha!

Thank you for thinking of me. I must change at this point whether I want to or not. There are things that obviously are not documented clearly in my medical record because the nurse could not find these things in my records. She's no good doctor I had to call the neurologist's nurses line two days ago because of a horrible unusual type of aura. I haven't heard back. That was two days ago. The nurse was very rude when she said so you won't have the battery replaced. She was even more rude when she said WHY? in response to me saying the matter has been so stressful. There must be good communication between all parties.

@lsittll

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My pleasure @lsittll! Sad to hear about all those conflicts. Hope you will be over it very soon!
Take care!
Santosha

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@santosha

My pleasure @lsittll! Sad to hear about all those conflicts. Hope you will be over it very soon!
Take care!
Santosha

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Hello@sana

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Hello @sanatosha!

The doctor will soon be in the dumpster. I cannot believe a doctor whom I have seen for 19 years can end up like this. She's definitely not worth out-of-network fees. I had a visit with my psychiatric nurse practitioner today. I told her she had no clues but said someone shoulc have been on call that day and that my call should have been returned. Hurray! That made my day.

Thank you for listening.

Have a nice holiday!

Laurie

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Hi Laurie (@lsittll)
I am very happy for you and that news!
Unfortunately, relationships are not always logical. But you have already spent much energy in this relationship that looks like has become toxic. Let's move on!
I wish you all the best!
@santosha

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@santosha

Hi Laurie (@lsittll)
I am very happy for you and that news!
Unfortunately, relationships are not always logical. But you have already spent much energy in this relationship that looks like has become toxic. Let's move on!
I wish you all the best!
@santosha

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Hello @sanatosha!

Thank you for your wishes!

I'm trying hard to find a doctor online that has the knowledge for my rare and complex seizure disorder I am a professional student so researching is nothing for me.

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@lsittll

Hello @sanatosha!

Thank you for your wishes!

I'm trying hard to find a doctor online that has the knowledge for my rare and complex seizure disorder I am a professional student so researching is nothing for me.

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Crossing my fingers for you @lsittll !!!! I hope to hear good news 🙂 from you soon!

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