It’s All in His Head!

Imagine how you feel when you are trying to get someone listen to you, to help work out what is happening and the Dr you are talking to you tells you that.

For months we have been trying to work out what we should be doing when Derek gets a fright and has an “episode”.  He would get a bad headache, loose focus, be unable to communicate properly, speech becomes slow, it is all he can do to be conscious, as and he has to lay down.

Then when you finally get an appointment with a Specialist and you are told that “it’s all in your head”.

Lets go back to last year………

While Derek was laying unconscious in hospital, I noticed that the left side of his face was slightly lower than his right.  I tried talking to the Dr’s about it, but they didn’t show any interest.

When he left hospital we noticed (I noticed) he had left side deficit in his leg and his foot would slap when he walked.

It took 6 months of physio to fix it to a point where we only notice it if he is really tired.

He also has the issues I recently highlighted where every time something happens he ends up needing to lay down for hours on end.

We have been searching the internet to try and find an answer.  We were sure it was to do with his adrenal glands, and the lack of an Adrenal Medulla, but couldn’t find anything to give us a hint of what it could be.

After our last visit to our GP he finally decided that it needed investigating.  Great.

He contacted Derek’s endocrinologist.  As far as the Endo was concerned, his Adrenal Insufficiency was under control.  He was sure it wasn’t that so he didn’t want to see him.

Derek was then passed on to a General Medical Consultant.  We are not sure how it worked, but the GM Consultant to take the case was  his Rheumatologist.  Great, but could he explain anything/everything?  Would he listen, would he be able to work it out.

Apparently yes, his explanation is that “it’s all in his head”.

The Dr confirmed that Derek’s Adrenal Insufficiency is under control.  He is on the right dose of Hydrocortisone, he is on the right dose of Fludrocortisone.  Using clinical observations, he could confirm that the petuitory gland was fine, blood tests confimed his thyroid glands were working properly.

As the Dr sat there listening to Derek’s symptoms he asked a lot of questions and made lots of notes.  The most interesting thing is that he LISTENED.  He didn’t just pay lip service to what we were saying, go aha, ok, then say, Don’t know, go away.  He asked for clarification of each individual symptom.

The whole appointment took 1.5 hours.

At the end of it, the conclusion was “forget everything from the neck down.  We will focus on your head, that is where the problem is.

I.e., “IT’S ALL IN YOUR HEAD”

THANKYOU!!!!!

Finally we are being listened to.

What the Dr explained is that once you put the fact he has no adrenal glands aside, all the symptoms that are left can be very easily tied to traumatic brain injury.  The same type of injury you see in car accident victims, head injury victims etc.

Derek is now being booked in for an MRI and a neurological exam.  The Dr believes that there was probably (in fact extremely likely) brain involvement with the CAPS last year.

They may not be able to prove through an MRI that there is damage, but a neruo exam will help.  He seems convinced however, that it has happened.  He did warn us that we may never be able to fix the problem, it may or may not get better, if it does, it may take up to 5 years to see any improvement, but we don’t expect to see it back to normal.  That is fine.  At least we will have an answer.  Somebody is taking the time to confirm what that there is a problem, and what the problem is.

We will finally get an answer.

We will then have to learn to live with whatever the results are, but that would be no different to what we are living with now.

“it’s all in his head” is a good thing.  Brain Injury not so good, but we can work with that.

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