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 group.

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.

REPLY
@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

Jump to this post

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

REPLY
@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

Jump to this post

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

REPLY
@santosha

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

Jump to this post

Hello@sana

REPLY

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

REPLY

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

REPLY
@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

Jump to this post

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.

REPLY
@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.

Jump to this post

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

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

Hello @jakedduck,
Today the neurologist's office called to schedule me for a follow-up appointment. I had cancellated my appointment with her. I told her assistant no more follow-up appointments for me. I have found another doctor. Dr. H. has become overcontrolling with the VNS but it has been a please to meet her and you may tell her that. The assistant said she would do so. Appropriate or not?

I had enough poo!

Laurie

REPLY

I am having issues with my doctor and his pa. She told me to take Tylenol for neuropathy and I thought my legs were going to burn off my body. I’m discouraged with how she has been so negative about my issues. Everyone says it’s depression and put me on gabapentin and quetiapine with Keppra and Cymbalta and clonazepam. Everything is affecting my GERD and making my neuropathy worse.

REPLY
@pamelaz

I am having issues with my doctor and his pa. She told me to take Tylenol for neuropathy and I thought my legs were going to burn off my body. I’m discouraged with how she has been so negative about my issues. Everyone says it’s depression and put me on gabapentin and quetiapine with Keppra and Cymbalta and clonazepam. Everything is affecting my GERD and making my neuropathy worse.

Jump to this post

Hi @pamelaz
If I were you in your situation, I would search for a second opinion. It took me quite some time to find a doctor (epileptologist) who respected my feelings and words and who was open to more natural ways of treating epilepsy as I am a person very sensitive to any medication. I have followed my instincts. It was worth the battle!!!!
Do not give up!!!
Santosha

REPLY

what do you have to do to make an appointment at mayo clinic in jacksonville,florida

REPLY
Please sign in or register to post a reply.
  Request Appointment