How do you prove this?

[LobDam]

25 years ago I woke with something that had changed in my brain. I then spent 20 years fighting with the NHS to get it acknowledged that this wasn't psychological. I recently made a big step forward, one neuro psych has agreed that I have executive functioning difficulties (low 1%) caused by a small stable cavernoma.

However, this still doesn't explain why for the last 25 years my cognitive functioning has been in decline. I'm now at the stage that my functioning has become critical. By this I mean independent and meaningful living will soon be a thing of the past. I'd like to get some help, especially medication but this is still going to be a major barrier.

How do I get myself on a path to finally proving my functioning is in catastrophic decline? I've only had MRI and ECG's. Are there other options that can see inside my brain and give a real picture of what is happening?

Has anyone else been in similar position? TiA

[Leaf100]

Hi LobDamBy neuro psych do you mean psychologist or psychiatrist (has an MD, psychiatric degree, and a brain degree).

A neuro psychiatrist has more clout and if he or she says it isn't psychological the odds of you getting more help are much higher.

They are really hard to get in to see.

Basically you just have to keep trying til someone gets it.

I would ask Headway if they can recommend someone. And, asking places like this and brain health groups in general may get you some names.

I am in Canada, so I can't help with that. I did see a neuro psychiatrist for awhile. He is retired now. Having him available to sign paperwork and refer me for testing made a huge difference.

The demand here is now so high you get a diagnostic path and then referred somewhere for monitoring- usually to a psychiatrist - the plain ones tend to label people as bi polar etc when they don't have it at all - its just they don't understand brain injury.

Anyway people who get it are out there you just have to keep digging.

Keep us posted.

Leaf

[1949liz]

it’s for me to say this private the only way you’re going to get a true answer is to pay that is state of the health today if you can afford it and see a neurosurgeon private. They then if you ask them can transfer you to the national health I wish you all the best. God bless you Liz.

[JPBeeves in reply to 1949liz]

I’m sorry you are having to go through this,However , have you spoken to your GP.

If your GP isn’t listening to you,you may have to be firm and demand something be done,or change GP Surgeries to one that will listen to you.

I had to change GP Surgeries a couple of years ago to get the ball rolling for me after 8 years of having a cerebral infarction and TIA’s

[sashaming1]

Contact healthunlocked.com/user/headwayuk and they may be able to help. OK, it's the link on this website!