Diagnosis troubles?

[Maidenminx]

I've read in here that some people have been having a hard time getting doctors to take them seriously. At first I thought this was something I couldn't relate to as I was medicated by my neurologist before I even saw him. Having a second tc before my appt with him made it easy to give me a diagnosis of temporal lobe epilepsy. I would like to now here that other than blood tests, he only test I have had is a basic CT scan.

So all of this made me think that this was the way people were diagnosed. Now I realise that if my husband hasn't witnessed the first one or he hadn't made it to the appt to describe what he had seen, I may not have a diagnosis.

Also reading up on seizures makes me sympathise so much for those that haven't had the extremity of something visible to be diagnosed by. I've been trying for years to get doctors to take my mental health issues seriously, so when I started having olfactory hallucinations I became really worried I was developing some sort of psychosis. Out would have been nice for them to ask a follow up question or 2 since I have describes over the years stomach upsets ranging from funny feelings, to anxiety, to nausea.

For those having difficulty getting a diagnosis I sympathise.

 

[Kal87]

Hi Maidenminx.

I had been tested for epilepsy in 2009 and my tests came back clear.
This then gave my psychiatrist the go-ahead to diagnose me with bipolar (I was hearing and seeing things which had prompted me to seek help initially.)

About 2 weeks ago, I had a tonic-clonc seizure (the first). I saw doctors who told me it was stress and that I needed to calm down.

It turns out I do have epilepsy. I myself thought I had psychological issues, so I can sympathize with you and others.

The best advice I can give is that you know yourself better than anyone else. Keep a journal of ALL funny feelings etc. And take the journal to your doctor as proof.

Also- just keep searching for a doctor who will take you seriously.

Sending you strength- don't lose hope.

 

[LJ-Bain]

I hate it when they say it's just stress. I mean, seriously?
They might as well be saying, oh, don't be silly!
There is one doctor in my neck of the woods that specializes in MS but is a general neurologist so he/she sees everything and he/she commonly dismisses epilepsy.
Reading up on posts about him/her my favourite is one woman states that he/she told her to relax, take up yoga and lose weight. She was diagnosed with epilepsy later on by a different neurologist.
I saw this Dr. when my troubles began 4 yrs ago and was diagnosed with conversion disorder which has haunted me ever since because this was at prestigious hospital. I have had to fight to get to the point I am today and even though they haven't totally figured me out yet at least I'm on my meds.
Thanks maidenminx for the sympathies.
Do you still get the olfactory hallucinations and nausea?
Kal: I can't believe they told you your t/c was just stresss!

 

[Kal87]

Some doctors really should not be practicing in my opinion.
I always thought doctors were synonymous with empathy. But it seems like they would rather get you out of their office asap than determine what the issue is.

Yes, I still get the hallucinations.
I only realized recently that they were epilepsy related. I was under the impression I had bipolar all these years...
I stopped my bipolar meds as the dosage increased monthly and it was too much for me.

So i've been dealing with these issues for the last 3 years. I've fainted in that time too but never realized I was having seizures until my boyfriend witnessed one.

I'm pretty scared about this- I am using meds (but homeopathic ones- conventional meds dont work for me),but will this progress in to demetia one day? Or possibly Alzheimers? My memory loss and general thinking abilities are deteriorating slowly but surely- so I wanted to know if anyone out there has had their epilepsy also result in other forms of forgetfulness etc?

thanks for the reply LJ

 

[LJ-Bain]

Kal 87:
You'd think that Drs. would be required to have a good bedside manner but it really isn't the case. Historically speaking Drs. would diagnose women who were most likely epileptic with "hysteria" and have their uterus and ovaries removed. This helped them because hormones often increase seizures so it really didn't help their case. Sometimes I think that this mindset has remained in some subtle ways.
I'm so sorry to hear that conventional meds don't work for you. Have they ever discussed surgery or implants in your case in the future?
Seizures absolutely muck with your memory and sense of alertness. It's a favourite topic on here that is for sure.
I wouldn't assume that one day you will have dementia or Alzheimers. Just because you have seizures it doesn't automatically predispose you to these things.
Of course you're scared! It's normal to be scared. Your body is letting you down.
Don't give up! Do they think that you have both psychological issues as well as seizures?
Have you found a Dr. who takes you seriously?