The waning doctor? Not understanding how I feel.
I have an epileptologist who has always worked with me in my treatment. She has not been controlling, However that seems to be changing. She knows I cannot afford to have the battery in my VNS to be replaced. She knows that I do not want it to be replaced. She is adamant that it is an added form of medication so I need it. It is an added form of medication that does any good for me? I have had it for nearly 21 years and there is no proof that it has ever helped my seizures. Last week she had her nurse call me to make an appointment for me to have the battery checked. I tell her I must pay nearly $1,000 in copays with my insurance to have this replaced. Have you seen a social worker? When was your last seizure? 2-3 months ago I told her. The secretary calls to make the appointment and she can sense that I would rather let the battery die and dies not make an appointment. The nurse calls me later I do not call her back.
This is all to stressful for me. It is unneeded stress! Luckily so far my seizures have handled it. But for how long? I am beginning to feel that the doctor does not understand or respect the way I feel. I am beginning to feel I need a change. I do not want to have to change doctors. I do not want any other med added. I only want my Zonisamide increased. I have noticed a great change in my seizures. They have become very infrequent.
Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.
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
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.
Crossing my fingers for you @lsittll !!!! I hope to hear good news 🙂 from you soon!
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
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.
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
what do you have to do to make an appointment at mayo clinic in jacksonville,florida
Hello,
I am new to this blog; however I have a 26 yr old daughter with complex seizure issues among other dx's. After reading the other messages regarding changing doctors has scared me to death. First, I have to say everything said, I definitely relate to...and I find that extremely concerning. She has been with her current Dr. for several years, but something has changed and my gut is telling me to change Dr.'s. That said, sometimes I feel the loyalty keeps pulling me back somehow. I have been trying real hard not to take things personal but that's not working. I'm stating to get super pissed off and I don't want to go there. Mayo Clinic Rochester Neurology department and comprehensive epilepsy unit is supposed to be ranked #1. I feel medically abandoned, dismissed and clearly there is a serious communication disconnect across the board. I'm not sure whats going on but I absolutely will not tolerate dealing with a toxic environment. My goal is to change Dr.s peacefully and move on, however I am not getting any return phone calls or return portal messages. So if anyone has any suggestions I would greatly appreciate some guidance. My daughter deserves better standard of care then she is receiving. Thanks and I look forward to some positive feedback
@terik Frankly, you have been abandoned. Doctors as well as teachers and bus drivers have a tendency to move on or be detached. Happens to all of us. First, accept that fact. Second, keep reading the internet, especially these pages. Third, ask at places like church, or school, or Masonic, etc.
I am having the same thing. I have many AI diseases, and I am learning to put together a team of several specialists. It's about the only thing left. oldkarl
Hi @terik
It took me a while to find my epileptologist, but it was worthwhile the battle. I also have complex partial seizures (Temporal Lobe Epilepsy).
I was referred to my current epileptologist by a neurosurgeon who was referred to me by a mother with a son with epilepsy. Referrals work very well here in Brazil (I live in São Paulo city)! Unfortunately, I can not help you with referrals to a good epileptologist in the States. Perhaps your family doctor could be helpful? Have you tried to contact the Epilepsy Foundation in the States? This is a great foundation that could help you. Perhaps there are other people here in our group living in the same region that could refer you to a good doctor. In what region/city do you live?
All the best!
Santosha