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About MyEpilepsyTeam
Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

EEGs

EEGs

Abnormal or Normal , Does it truly matter? does the recount of what happened matter more . Black marks in the doctor's book
- Recounting as much as possible
- Psychiatricat institutionalization In public or private hospitals
- any injuries pain related
- female
- criminal record
I want to be treated like a human and I do not understand why at every hospital I have to start over from square 1
I am already diagnosed with
idiopathic generalized seizures (epilepsy)
Cluster seizures
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A MyEpilepsyTeam Member said:

So sorry you are having a hard time. I totally get it. I feel like a malingerer when I see a doctor, though I am desperate to get my meds and not have a seizure. I try so hard to be civil to them and be grateful for the care I am able to get. Hang in there. You are not alone.

posted 10 months ago
A MyEpilepsyTeam Member said:

I have a folder I take to all appointments containing my full PMH, relevant publications about my conditions as well as my bloods, meds and hospital letters. Im a complex zebra and by doing this it saves having to keep repeating the same info and the " 2 headed look" Drs can give.
Do you know the causation of your seizures as thiamine, niacin, B12, folate deficiency can all have neuropsychiatric presentation and cause seizures due to encepholopathy that results from long term untreated deficiency. I have a genetic liver condition as well as metabolic issues caused by another condition.
A right combo that has resulted in many Drs running for the hills.
It's the best way to explain your condition to a new Dr. I remember one Dr laughing at me so I handed him the relevant easy read 101 I keep at the front of my file.
I hate having to say " do you think it's appropriate to prescribe that.....?" I then hand over the abnormal drug kenetics publication.
I have had no option but to self educate and truly empathise with your dilemma

posted 10 months ago
A MyEpilepsyTeam Member said:

Were not able to see our medical records in the UK I'm fairly sure we have to put in a ftreedom of information request I'm between Neuros. Even though I've chased up reports from the old centre to the new one ( they should be on an accessible clinical portal but aren't yet) I fully expect to have to start explaining everything from scratch -43years worth ,to the new neuroscience Annoying !

posted 10 months ago
A MyEpilepsyTeam Member said:

You can gain access to your own medical records - they are records on you after all. Once you get them you have them as long as you want.

posted 10 months ago
A MyEpilepsyTeam Member said:

I have the same problem, I was told that the doctor have to know for themselves where to begin with helping our epilepsy. Sounds crazy but that's how they do it. I think our med records last only for seven years 🤷‍♀️

posted 10 months ago
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