Newbie says hi :)
 

Hi there!
I came across this forum because I was looking for rsd stuff but I also suffer from pcs from a fall in May 06 (I spent 2 weeks in hospital after that), I've subsequently had at least 6 more concussions since then mainly from falling down stairs. They discovered that my vestibular system wasn't working properly so I didnt register I was falling till I came too after being knocked out.

My problem is that since nothing showed up on my CT scan, the neurologist says there is nothing wrong with me. All I wanted was justification that its ok to feel the way I do. My physio says she believes me and has seen how it affects me as she is also one of my tutors. Have any of you been told that its not true since nothing shows up on scans?

Its the physical and mental exhaustion that gets me the most, you walk around in a fog with a horrible headache trying to get things done when you are just too tired to do anything. I find that around 2-3pm I actually need to lie down and sleep most days and its just not possible. And the concentration issues, if you cant concentrate, you dont have the memory in the first place. My Mum and my friends are always saying 'you know how I told you/said..." and I have no idea what they are talking about! The call me goldfish now lol.

I'm a physio student about to start my 3rd year, its sad as my grades have dropped dramatically since my first head injury but luckily still enough to pass respectibly although I have to put a lot more effort into getting what I do.

Its hard, because of the rsd I am on meds that have side effects that are similar to pcs (and also rsd has some of the same symptoms too) so sometimes I wonder if they are compounding the situation but I need the meds or I would kill myself from the pain.

I have to say though, my Uni is pretty good about it all, they help me by letting me record my lectures and I get extra time for my exams.

Anyways I just wanted to say hi and see if anyone else had had trouble with specialists.

hi
 

hi there just wanted to say welcome

cant comment on my docs i did have problem with my gp but changed docs :hug:

"My problem is that since nothing showed up on my CT scan, the neurologist says there is nothing wrong with me. All I wanted was justification that its ok to feel the way I do. My physio says she believes me and has seen how it affects me as she is also one of my tutors. Have any of you been told that its not true since nothing shows up on scans?"

Aleesea:

A normal CT scan doesn't mean that nothing is wrong. My teenage daughter had a series of concussions with subsequent CT scans (4 times) and each one showed no abnormality. But she continued to suffer from PCS (vertigo, fatigue, difficulty concentrating/focusing, headaches, sound and light sensitivity, near-fainting spells). It was so frustrating dealing with so-called "experts" who concluded that it was all in her head. (Ha ha ha.) Since they had never come across this, and her CT scans were normal -- this is going back 3 years -- they diagnosed her symptoms as being emotionally-based. We had her checked out by two shrinks who both said that she was the most emotionally healthy adolescent they've ever seen. This forum has been crucial in helping to validate that what she was going through was real.

I'm happy to report that she's been symptom-free for about 5 months and off all meds for about 2 months. You can check my previous posts, but the treatments that worked for her (not all simultaneously) were:
1-Antivert for the vertigo; 2-Effexor to help re-establish nerve pathways; 3-Acupunture; 4-Homeeopathy; and 5-Osteopathy.

Good luck to you, dear.

welcome
 

Hi Alessea,

Welcome to this site and hugs to you! :hug:

I did have a neurologist (10 yrs ago - my first) who was a jerk. He was very stern, accusatory, and kind of demeaning :(. I moved to a new area a year or two later, and discovered that not all neuro's were that way :) What a relief! I do recommend that people try to work issues out with their doc's, if possible. You can tell him/her how you feel. Ask for clarification and reasoning to be explained to you.

For instance: at doctor's appointments, my mind feels as though it's going both really fast & is at dead stop at the same time. As I try to control my thinking pattern, the doctor sits and waits. If he did not know about my tbi, he would wonder what in the world I'm still doing there! I, then, make a very brief statement (maybe one sentence) which is my summary of the appointment. The doctor will then say "yes" or "no", and go a little farther. As he does so, my mind finally allows me to speak again - this is usually the time in which I express my feelings and concerns. My doctor then has the knowledge of my interpretation and how I am feeling, and reacts accordingly.

That has come in handy a couple of times with my epileptologist. He is able to make me feel better by reassuring me and putting things into different words to help me understand. He now has a better understanding of my level of cognitive function. While I've had many tests, they are still just a portait of a certain area in my brain at that particular time. Most doctors will readily admit that it's just a slice. That's partly why there are so many tests. If you haven't had neurocognitive testing, you may want to get that done, in order to see what areas are weak & which are strong/er. It will bring up attention, focus, concentration, memory skills, mathematical skills, spacial, reasoning, ... and a couple other skills.

Hope that this helps you!
Shez