Feeling blamed for PCS by UK specialist
 

Hi, I was knocked off my bike 2 yrs ago, and since then had all the classic PCS symptoms , especially fatigue, brain fog, speech issues, memory issues. I have been gradually recovering, but my resilience is still low if I don't pace myself and rest. My old symptoms return if I overdo it.
I have been waiting patiently to see the neuropyschologist in the UK on NHS... only to find out that as the whole concept of how to treat PCS is a split camp medically, and my specialist is on the side that "if you cant see it with an MRI and you didnt lose consciousness, theres nothing really wrong with you" they want to treat me with CBT!

They also found in the neuro pysch tests that I am intelligent; the curse of that is you cant just accept what they tell you, you read around and realise that there are people in the States and Europe who dont agree with the fact that "its your coping mechanisms that are at fault" and are looking at more sensitive measures and ways of helping. I have my first CBT session with a student studying under this consultant tomorrow, and I am going to find it hard not to get angry at her, because I feel their whole approach is flawed.

It would really help me to speak to others in the same position. Really, I have done everything in my power to recover, I am not hanging onto the illness but now feel like I am being blamed for creating persistant PCS.

truewoman,

Welcome to NeuroTalk.

I understand the struggle you are having with 'specialists' and other professionals. The high intelligence scores in the NPA are likely being used against you. They did the same with me. There is an uninformed belief that high intelligence does not survive a true concussion. The truth is functions can deteriorate much more than intelligence for many people.

I have a few questions.

What are your current struggles/symptoms?

What are your objectives in seeking continuing treatment?

Are you expecting further recovery?

Have you come to terms with your current state by accepting it as long term?

Have you had any hormone analysis?

I have more Q & A for you later.

My best to you.

Hey,

I know EXACTLY how you feel. I am an American that has lived in a developing country for the past 3 years. I sustained multiple "light" concussions right after each other a couple years ago and still to this day have many issues similar to you. I have been to 3 neurologists, 1 cardiologist, and multiple general physicians who all tell me "it's in my head" (as well as my fiance). I have had an MRI last year that came back normal and a full general health checkup that tags me as healthy, so no one takes me seriously.

My processing speed is very slow and I have lost my ability to work to the degree that I used to, ability to take part in my old hobbies, I am sick ALL the time, depressed, and can see my fiance soon to be the next to go. I feel completely alone.

That said, I am trying to see the good in all this. I truly believe even all that bad that has come with it, this thing has made me a stronger and more caring person. I may seem weak to others right now, but I know one day I will recover completely and hope I can help others going through this.

Sorry that I am not much help on your road to recovery, but thank you for your post. It helps to know I am not completely alone and neither are you.

I think it highlights how little medical research is conducted in getting to the bottom of PCS. Yes, there is a strong connection between mind and body but it's a physical event that begins these symptoms we endure.