Want to be taken seriously

[anna114young]

I am looking for some advice. 4 years ago I had a seizure out of the blue, I had never had one before. Luckily it was witnessed by someone with knowledge of epilepsy who called 999.

I was sent to the "First Fit Clinic" at my local hospital and I was told it was 100% not epilepsy because I did not wet myself, bite my tongue and it wasn't a tonic clonic seizure (shaking etc). I was told that I had either a brain tumour, heart problem or psychological problem.

This lead to months of scans looking for the tumour, heart monitoring and not so subtle checking of my mental health.

After months they finally they did an EEG (test for abnormal electrical activity in the brain) and after the results went missing etc etc and many months later - guess what. Epilepsy.

I have had my epilepsy under control for a few years now but recently someone has alerted me to a research paper that shows sudden onset Adult epilepsy can be caused by a very common parasite found on cats/dogs.

I have mentioned this to my consultant and got an eye roll and I'm told they won't look into this.

I am okay with my diagnosis but AIBU to want to be checked for this parasite? Nobody in my family has epilepsy and no cause has ever been found. If it is linked to this parasite, medication could mean that I will be seizure free. If it is this parasite and remains untreated it can lead to dementia and parkinsons.

I just feel like nobody takes me seriously....

It is your right to a second opinion, I would be researching the best hospital and asking to be referred there.

@bloodywhitecat

It is your right to a second opinion, I would be researching the best hospital and asking to be referred there.

Thanks, I might do that. It's hard as this is a very large and well known hospital and I don't live near any others...

I am going to speak to my GP because from my understanding it's just a blood test that I need!

Slightly different but DH has a rare and aggressive cancer, we come under a local hospital with an OK oncology centre but no specialists in his type of cancer so are currently having help from University College Hospital in London, we are nowhere near there so all meetings so far have been virtual. Don't let distance be a barrier.

Have you actually seen the "research paper" that shows sudden onset Adult epilepsy can be caused by a very common parasite found on cats/dogs? Is it based on solid research, from a reputable place and peer-reviewed, or is it a piece of journalists research cobbled together from other studies?
If it's the latter, then I can understand the consultant eye-rolling as they get people coming in with masses of google searches of spurious 'research.'
If it's the former, then make sure you can properly identify it and show your GP.

My honest opinion of the NHS these days is that they listen with one ear, pack you off with the cheapest medication they can prescribe and boot you out the door.

If you can afford it, I'd book a private consultation. DH was recently having issues with his heart rhythm and our GP has been spectacularly useless. So we paid £250 and he had a 30 minute phone appointment with the cardiologist. It's moved on quicker in 2 weeks than it has done since last March.

@NormaSnorks

Have you actually seen the "research paper" that shows sudden onset Adult epilepsy can be caused by a very common parasite found on cats/dogs? Is it based on solid research, from a reputable place and peer-reviewed, or is it a piece of journalists research cobbled together from other studies? If it's the latter, then I can understand the consultant eye-rolling as they get people coming in with masses of google searches of spurious 'research.' If it's the former, then make sure you can properly identify it and show your GP.

Hey Norma,

I have and the friend who shared it with me works in the medical field. She learned about it in a seminar and is peer-reviewed etc etc.

Maybe it would help if I shared the paper with the doctor.

There was a meta analysis done which showed an association between the 2 conditions but as you know association doesn’t necessarily mean causation.
Serology would help confirm any immune response to the parasite but even if it was positive it wouldn’t prove a causal link.

@Moreguac firstly - love the name.

Second - do you have a research paper or anything? This is so helpful!

I have a telephone app tomorrow with a GP, not sure what to say to them. I don't want them thinking I'm a hypochondriac etc. I have a number of health conditions and manage them really well, this study has just spooked me a little...

There are a few meta analyses in PubMed and Cochrane Library so I would probably look there.
But just be mindful that association isn’t the same as causation

Thanks @Moreguac you've been helpful.
I understand what you are saying about association not being the same as causation. I don't know if you are a medic but do you think it is worth me continuing to press for a blood test for this?