Hello…this is my story.

Roughly 40 years, a fall and blow to my face forever changed my life. Unfortunately I was young and it was the seventies so not a whole lot other than a “wait and see” type diagnosis was given. I suffered a laceration to my cheek, but the wound healed nicely and plastic surgery was avoided. The scar on my cheek just looks like another laugh line.

I would go on to experience multiple instances where I most like caused my brain to be shaken up a bit. I would fall again when I was about 8 and take another blow to my face, this time only to chip a tooth. I was a softball catcher for about 8 years and had numerous foul balls ricochet off my mask. In high school I was in a car accident. I was a backseat passenger who was sleeping when a car t-boned the car I was in. My head was near the point of impact. I was also in a bike accident in my thirties. I stuck a car’s front tire and vaulted over my handlebars and onto the hood of their vehicle. In all of those incidences, I never lost consciousness and felt relatively fine at that time, but things really weren’t fine with me.

I lived life with this gut feeling that something wasn’t quite right with me, but I couldn’t really figure it out. All I knew was that I was getting through life without too much trouble, but again I wasn’t really sure how. My first clue was some issues I had with learning in school. I knew I had problems, but my IQ was high enough to compensate for my deficiencies. I couldn’t understand how I could be both smart and stupid at the same time. When you’re 10, it’s a difficult concept to understand.

I didn’t know my problem was learning disabilities. I wasn’t the kid who couldn’t complete homework assignments or the one hounding the teacher for answers. I wasn’t the kid who couldn’t read, solve math problems or spell words. I was the quiet one who had vision and hearing problems. I was the one who had problems processing information. I couldn’t always read the chalkboard or hear the teacher say something. I had to read and re-read information to remember it. I had trouble expressing myself verbally and on paper. I could regurgitate information, but I couldn’t use that information to express an opinion about it. In spite of those problems, I experienced success in school and even went on to graduate from college.

My communication problems, the childhood abuse I suffered from and the denial I was in about my sexuality caused me to isolate myself from other people. I became a social misfit. I grew up a dysfunctional family so I didn’t know how to express myself. I grew up not really knowing how to talk to people. I answered questions using one word…yes, fine, ok, good. I didn’t let anyone get close to me. I rejected my peers so they wouldn’t reject me. I was the wallflower who didn’t want to be noticed because if people paid attention to me, they might find out how flawed I really was.

I didn’t know I had emotional problems until puberty. I started to experience an overwhelming sense of loneliness and sadness. When I cried, I knew I was crying way too much and way too long. I distinctly remember going to my first funeral in junior high. I cried and cried over someone I only saw twice a year. I didn’t even know much about who the man really was except that he was a relative of mine.

I know that when I have difficulty communicating with people, my emotions get the best of me. For example, I was at the doctor’s office explaining my past medical history. I got really frustrated when the doctor didn’t understand a feeling in my head I was trying to describe. Then, when I felt like she didn’t really believe what was happening to me, I began to lose control of my emotions. I started crying out of that frustration so immediately she jumped to conclusions, thought I was depressed and wanted to prescribe me medication for it.

I’ve had other doctors just downright **** me off. One wrote in his report that he thought I was a hypochondriac, but to cover his *** he said that he wasn’t going to rule out MS as a possible diagnosis. Another one confronted me and asked if I was online looking up medical stuff. My thought was, who isn’t? Doctors don’t have all the answers. Again I got ****** off, started crying and left her office feeling frustrated and angry.

I always had this sense that I was damned if I do, damned if I don’t feeling. If I came prepared to appointments with symptoms written down and a timeline of all the things that was going on with me physically, it was frowned upon because it made me seem like a hypochondriac. If I didn’t bring anything, I invariably left out some important things because of my memory issues and the doctor couldn’t get a clear picture of what was really wrong with me. I usually walked away feeling like I paid $20 bucks for nothing or to be insulted.

Five years ago I had given up on doctors. Things were happening and I just pretended like nothing was wrong. It was wrong of me to behave that way, but I was growing quite annoyed with doctors. I knew I was having congestive heart failure symptoms, but I just kept an eye on how I felt and eventually the symptoms went away. That went on for about a year. Eventually I got sucked back in because I started having other problems that I just couldn’t handle anymore.

Throughout my life I’ve dealt with sensory problems, vision being the first and foremost problem. I have myopia and astigmatisms, both of which are common enough issues with millions of people. I played sports in school and that’s when I realized that something else probably wasn’t quite right with my eyes. I had trouble striking objects properly (probably some sort of accommodation or convergence problem). My depth perception must have been somewhat off too because I remember struggling to shoot baskets. I’ve been super light sensitive for as long as I can remember and if I ever forgot to wear sunglasses outside, I knew I was going to get a migraine. In my twenties I thought I had seen the pupils of my eyes look like they were different sizes. I blew it off thinking that I was seeing things. I noticed them again in my thirties and now in my forties it’s much more frequent. In my thirties I temporarily lost my peripheral vision in one eye on separate occasions for less than a minute each. A retinal specialist couldn’t figure out the cause, but I did find out that I had a vertical imbalance and that I was developing cataracts.

I’ve always had some kind of issue with my hearing. Speech seemed to be so muffled at times. Hearing sound was never a problem. In fact I always thought I was hypersensitive when it came to sound and could hear sounds when other people couldn’t, but recognizing speech was something entirely different. It was weird. I hear some people just fine and some not at all. Sometimes I could hear everything but a few words. Obviously if my surrounding environment is quiet I can hear better than I can if I’m in an environment with lots of background noise. When I listen to music, I can’t always figure out the lyrics. I feel like those people in the commercial who make up their own lyrics to the songs.

I always hated talking on the telephone for obvious reasons. I prefer to text or email. My parents used to tease me about have selective hearing, but they didn’t know I had real issues. I never knew myself until I read that hearing sound and hearing speech were two different things. I’ve had times in my life when sound was something I could completely block out. When I was in college I did the majority of my studying in the bowling alley on campus. I’ve had other times in my life when I couldn’t even turn on the TV or radio because it hurt too much.

My physical symptoms have been numerous, but since they’ve been spread out over the course of 40 years, it’s been difficult to discover what was troubling me. Some things have been with me for years and years, but others were very brief. Some things have been proven with medical testing and yet others couldn’t. That part has been especially frustrating. I knew all these things were happening to me and I wanted to know why. After awhile of being denied the truth, you begin questioning your sanity, you really do.

I began my college education as a pre-med major and I took multiple courses in the health field so my initial investigation into my physical problems started then. I was faced with several problems though. The information was always out there, but it just wasn’t easily accessible as it is today. There was no internet or Google to search. You couldn’t click on a few pages in a matter of minutes and find the information out. You actually had to look stuff up in books in the library. Computers were primitive at that time so you had to read books and take notes on paper. All of that was very time consuming. I had the resources available to me, but being a college student I didn’t really have the time to do the extensive researching.

When I was growing up no one recognized the problems I was having….not my parents, not my teachers, not even my doctors. If there’s anyone I really blame, it’s myself because I knew a couple things weren‘t quite right, but fear held me back from saying anything. I didn’t want to get into trouble and I didn’t want to be different than other people. On the other hand, I was a child with limited knowledge of the world. How was I to know what was normal or not? How was I to know that a sagging eye lid meant something other than a muscle being tired? I had never heard of Myasthenia Gravis or Horner’s Syndrome. Ultimately it was learning that I had Horner’s Syndrome that unlocked the mystery surrounding my health, but it was me doing the research on it and other related searches that brought me closer to the answer…not my doctors.

You know that commercial where there are people in a supermarket…one person says a word and all of a sudden it starts this word association game? In the end one person has a mouth full of something pretending he’s John Belushi’s character from Animal House. He pushes on his cheeks to simulate the squeezing of the zit and stuff comes flying out of his mouth. The final word association is “food fight!” and all the people start launching food at each other. That commercial symbolizes what’s been going on in my head these past few months. I was playing this word association game. I’d look up one medical term, then another and another. Most of the time I felt like I was going round and round in circles like the hamster on a wheel. Eventually that process led me in the right direction. I told my PCP about the head trauma and she suggested a neuropsychological evaluation.

It was only recently that I even entertained the possibility of having some form of autism. That was one of the medical terms I came across in my search. Up until then, I always thought that autistic people were the ones wearing the helmets on their heads. I was naïve and didn’t know there was this whole spectrum out there. In a way I was right to suspect that I might be autistic. I read somewhere on the net that people with brain injuries often have the same problems in common. I had the social, communication, sensory and language issues in common and since the injury occurred when I was 4, it literally could’ve been one diagnosis or the other. I knew I had some issue with my feet when I was learning to walk and had to wear special shoes and leg braces. My parents remembered that much, but they couldn’t remember why I needed them. I couldn’t recall is if I walked and talked when I was supposed to, but I most likely did. My neuropsychologist ruled out the autism diagnosis mainly because I’m a whiz when it comes to nonverbal testing. My problem is on the verbal side.

I should say that officially I haven’t been diagnosed because I just recently went through the neuropsychological testing, but the scores indicate that I have borderline brain function in certain areas. I have yet to go back to my PCP to discuss the results with her. I do need to go back and have more testing done. I still have multiple physical issues that are decreasing my quality of life. I want to get my hormone levels checked. I was reading something about hypopituitarism and brain injury. I already have an issue with hypothyroidism. I had a hypoglycemic attack just recently and I have some suspicion about it causing my sleep problem. I experience fatigue quite a bit, too, so I question whether or not my adrenal gland hormone levels are right. Five years ago I developed adult rosacea which is caused by hormones so I think it’s safe to assume there is something going on.

Life certainly has been an adventure for me, but at least now I’m FINALLY starting to get some of the answers I seek. It’s been quite a learning experience. I’ve spent almost forty years waiting for the light bulb to come on. Little by little though, I’ve been able to put many of the pieces of the puzzle together myself. Better now than never I suppose. I’ve learned that it’s not uncommon for some people to go through their entire lives with an undiagnosed brain injury. I just couldn’t imagine… all I can say is thank goodness the internet was finally invented. Without it, I’d still probably be stuck in my search for answers.

There are still some things that are a mystery to me, but at least I’m discovering what my true reality is. I’ve dealt with the reality my entire life so I really don’t know a different kind of life. I didn’t have this “normal” life one minute and then a completely different life the next. In some ways I think they are fortunate to know right away what caused a change in them. In other ways I think I’m more fortunate because I didn’t have to deal with the separate realities. The hardest part for me was the not knowing. Again, how can someone be so intelligent and not know what’s wrong with them? That’s the question that haunts me the most. It just blows my mind away.

Anyways, that’s my story so far… thanks for taking the time to read it.

Amy,

Welcome to the boards!

We're all on this boat together and I feel badly for you having to struggle for so many years. I've only had this for 3 months now and couldn't imagine going through what you have. You must've felt so alone.

Good news, you're not alone! There are so many ppl here with knowledge and understanding and can be a strength to you.

Feel free to post any questions or share what you're going through we're all here to help.

My best to you,

Kelly

Thanks Kelly...It's good to finally find a place like this. Looks like this forum has an abundance of information available and is full of helpful people like yourself.

Hopefully I can find some of the other answers I'm searching for.

Amy

You'll find lots of info here and if I can't help others will.

I'm still learning too.

Feel free to PM me if you like

Take care

Guess I don't have the ability to PM yet since I'm new here, but I know that today is the day you have your neuropsych tests so I wanted to wish you luck!

That is so nice thank you

I've actually been up for a while not coz of the appointment but of another nightmare.

I wonder if I should mention this as a symptom to the specialist?

I feel like I'm going crazy!