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Having Some Doctor Issues And Just Need Help Figuring Things Out?
i got diagnosed with a kidney disease called igA nephropathy at 18 years old, then at 20 years old they found a tumor on my scalp which was a benign tumor called neurofibroma. then in may of 2022, 21 years old i go diagnosed with epilepsy. i have a lot of break through seizures. they actually found out when i have a seizure i have three different types of seizures in ONE seizure if that makes sense? sometimes it’ll be just one type of seizure but they found out lot of seizures i have i’ll be… read more
Closest one to me is about 8 hours one way. There is no possible way to go there. We tried. But my neurologist here set me up on a teleconference with a specialist in Florida. That got us answers and progress. Just keep asking!
Doctor issues is a nice way to say it...create a list of questions and be sure you have a clear statement of what goal you are trying to reach with whatever treatment they do--meds, therapy, whatever. On your first visit--ask your questions--take notes--if they get pissy, they are not the doctor for you. If they lie...I had one recently do just that...walk away. Keep looking for the doctors you feel comfortable with. They are out there. Ask for referrals and opinions from regular people, too. You have to work for your own health and build your team--don't expect doctors to do it and don't trust the insurance companies to do it. It's all on each of us. I started keeping a notebook and documenting visits and what I was told...finally my husband had to start going in to every appointment with me. We have "fired" more than a few doctors and "health-care-professionals". Some of these people just got a job...others are true healers. Keep sorting and sifting through them. You'll find the right ones.
@A MyEpilepsyTeam Member @A MyEpilepsyTeam Member i do see a neurologist at the moment but we were told it was a big team of neuro doctors when last week we found out it was just one person on my doctor team which is actually a nurse practitioner not an actual higher doctor you know? we are trying to get mayo clinic tests back before looking at any other doctors, i am trying to also get in with an auto immune doctor aswell just cause we don’t know, it could be an auto immune thing cause i’ve got kidney issues aswell, we aren’t sure:/ we found out the 7th that i’ve got three tumors so now we are worried that those could be tied with everything we don’t know what to do anymore:/ kidney problems, body pain everywhere, seizures EVERYDAY had four yesterday and already two so far today:/ then the tumors i don’t know it’s just so odd and my mom and i just need to do more research and if anyone else knows anything with those practices or anything yea just message me if able toooo
@A MyEpilepsyTeam Member another question... where do you live? i say this cause where i live (northwest indiana) i have for my epilepsy center is the universaty of chicago hospital (more of a teaching hosptal), rush, northwestern. just less or at a hour away (without traffic). (i feel old but...) when rush and northwestern was just starting out (the 1990's)... i went to the cleveland clinic (cleveland ohio)(about 6 hours drive with pit-stops) for my treatment and evenually surgery.
so... i asked agian... where do you live and what seizure hosptal is closer?
You need a real recommended Epileptologist . If not a Neurologist.
If you go to www.naec-epilepsy.org
You can search for a Epilepsy Center nearest you.
The FDA Published This: Https://www.theepochtimes.com/health/fda-warning-drug-used-by-2-million-americans-has-fatal-side-effect-(Phone Number Can Only Be Seen By MyEpilepsyTeam Users)
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