I am wondering if anyone else out there suffers with this disorder? I was originally diagnose with fibromyalgia and several other conditions associated with it. It was further thought that I also had Multiple Sclerosis also. I have seen many different docs to find out what all may be going on with me. Long story short, after many docs told me I needed to see a psyhiatrist, a neurologist did a PET Scan. Sure enough, it showed a slight metabolic decrease in my left temporal lobe and a mild metabolic decrease on both sides of my cerebellum. I saw a Neurologist at Hershey Medical Center a couple weeks ago. He thinks my 'fibro' is actually related to PCS. I do still have Interstitial Cystitis, IBS, and Acid Reflux.
I am almost 41. I have had many concussions in my life. Two have been really bad. The first when I was 9. I fell backwards onto concrete while swinging on two sides of an open gate. I ws instantly knocked unconsious and was blind for a couple days. Don't remember much from that time. When I was 28, I had my other bad concussion. I ws cleaning out my fridge and came up pretty fast. Got the bottom of my freezer handle. I saw stars and almost blacked out that time. That's when a lot of what I experience started. I remember taking a nap and not knowing who my children were when I saw them. It was horrible! a few days later, I got a massive headache, my entire body began to shake( as if I was wide awake while having a grand mal seizue), and my speech was effected. I was stuttering and slurring my speech. Not to mention, having trouble recalling the word I was looking for. I ws rushed to the doctors ffice and tests showed no stroke. It was all directly related to my concussion. Years went by and about 4 years ago, I fell down a flight of steps. Received a very mild bump on the head. I have been having medical issues ever since that fall. What caused me to fall was my right leg locked up on me. My symptoms include all found with fibromyalgia but include the speech problems, occasion body shakes, vision issues, periodic and temporary weakness in arms and legs, numbness and tingling that's also periodic and temproary, balance problems, short term memory problems, occassional overreactions and sudden anger, major fatigue, and periodic and temporary loss of the use of an arm or a leg.
I was just approved for SSDI for the fibro and interstitial cystitis. I will be going for 5 hours of specialiszed testing in June to how how extensive the brain damage is. If you have any experiences with this diagnosis, I will be more than happy to talk with you. I know it is a fairly rare condition given my history. I am not an athelete and was not in a car accident. Nor am I a teeneager anymore.
From what I've read, it can be hard to receive a diagnosis of PCS as doctors believe it to be post-traumatic stress disorder.
It has been my experience that those suffering more mild head injuries in a lifetime are more prone to have the lasting symptoms of a concussion - it's as though your brain has a harder time each time healing. To me this makes sense - as most parts of your body that are repeatedly damaged over a lifetime cross over into the "ailments" category.
I've had four medically documented concussions, but had many head injuries as a child. The last one was in December - I actually got a whiplash head injury from hitting the back of a car with my bike (she cut me off in traffic and just stopped dead). The icing on top of the cake for that one was that 3 days later, I slammed my forehead into the corner of a wall (difficult to explain) and it literally made me stupid as my head was in the healing process and that just made things 10x worse. I was on my way to work when that happened and I couldnt remember how to do anything. People were talking to me and I was looking at the shiny objects outside - that set off the red flags for myself and those around me.
It took about a month to "come out of the fog" on that one - It's now been about four months since and while many things have improved, some things just havent gotten better. I've been repeatedly tested for seizure disorders (from post-traumatic seizures), I developed a stutter, I have chronic goosebumps and tingles going up my legs and back, I have visual snow and "persisting afterimages," and chronic daily headaches to boot. And of course my ears are still ringing.. the right half of my body is consistently colder than the other. Lots of fun things like that.
I feel fortunate enough to have a neurologist who doesn't shrug things off. I have a really strange phenomenon where I see familiar faces everywhere. It's that automatic and unconscious recognition of a person, where their name just pops into your head. Well, any kind of similar physical feature will automatically register as someone I know or have seen somewhere. This is the strangest of all my "things" I think. I live in Boston - there are people EVERYWHERE - I work at a coffee shop - so I see a lot of faces during the day. When I ride the bus or the subway, I'll think I see strangers from the day before - I end up staring at these people and thinking that's weird, I saw them on the bus yesterday. Of course none of these people are actually the same person or people I know, but it's that unconscious recognition - I'm aware that I do this, but I cannot be hyper-aware to prevent it. It's literally driving me insane. When strangers have very similar features, I cannot tell them apart - I know every single regular's drink order, but now I find that there are so many people that share similar characteristics that I bounce back and forth in my head and always have to ask. My short-term memory kinda sucks, some days it's a lot worse than others.
A lifetime of head injuries is NO joke. It really messes with everything in the strangest ways. Finding a way to deal with it all can be very difficult - I end up keeping it all to myself. Friends, coworkers, and roommates do ask about my brain frequently, but most of it is hard to explain and sounds crazy. But when people's brains have been knocked around as much as ours have, everything becomes medically interesting because much of the brain is still a mystery. I ended up reading a lot of books about the brain, the biology, functions, and psychiatry (that was when I could read again, that took about a month and a half after the last concussion). Dr. Daniel Amen writes a lot about brain health (including diet, exercise, lifestyle, etc.) - definitely check him out.
I totally understand your problems, have you seen a Consultant Opthalmologist? It sounds as though you may have optic ataxia. Do you have difficulty accurately judging distances? do you walk into tables or spill milk when pouring into a cup?
I was assaulted two years ago and diagnosed with traumatic brain injury. Since then I am sick to death of the psychologists and neuropsychologists passing me from one to the other, and I am still awaiting treatment to help me adjust. You are very fortunate to have an understanding Neurologist.
I experienced balance problems and really bad incidents of vertigo. I still suffer from impaired concentration, slow processing time, over reactive anger and behavioural issues to name a few.
It seems you may bne getting more help than I am in the UK.
Hope your health improves soon.
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I am very fortunate to have the docs I have now. I went for over 10 years to find just a family doctor who would listen to me and help. Don't give up! There is someone out there that can and will help you. Not only do I have the PCS, and neuro tests receal my major issue is my brain processes info slower than it should, but I was just diagnosed last week with multiple sclerosis. It was only found becasue of a MRI my family doc ordered. I woke up one morning with major double vision. I still suffer with the vision, but it is somewhat better now. My family doc told me the official name for the double vision is optic neuritis. I will have to look into the other vision issues. I have seen an optamologist several years ago. He diagnosed floaters. I will periodicly see black spots, especially in the sunlight. I am in a high risk group for retinal detachment.
Yes, I do 'bounce' off everything all the time. I always have. At the moment, I am wearing an aircast and on crutches. I tripped over a chair and severely sprained my ankle. I do stuff like that all the time. My left periphreal equilibrium only functions at around 10%. That was about 5 years ago. I believe it is worse now. That i sa direct result of an ex husband slapping me in my ear for several years. It definitely didn't help with the brain injury that was already there.
I wish you lots of luck and don't give up on your search. I travel for a little over an hour to see all my specialists. The drive causes major muscle spasms in my back. It's what I have to do to be able to get the quality of care I am receiving. It just so happened that my specialists accept my insurance. All the other specialists, with a couple exceptions, who are close to where I live are the ones that passed me off too.
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I note you also type because as becasue, something I persistently do and have no idea why the letters always come out in the right order. Your case must be complex becasue of the MS, my Mother is 80 and was only diagnosed with MS at 72 after 3 years of problems, largely because consultants cannot think outside of the box - she was told if she had MS she would have had problems years previously.
I was diagnosed with the TBI 6 months after the assault and since then neuropsychologists tell me it is psychological and psychologists tell me I have no psychological issues and therefore it is neurological. As a result two years on I have no treatment to help me adjust and I have been off work for almost two years as a result of irritability and explosive anger arising from the assault.
What concerns me is the lack of speed, I seem to spend my life on waiting lists just to be let down and given no treatment.
The double vision is something that can be associated with MS or head injury - try googling optic ataxia and check it out on the web. I am certainly no expert and had not heard of it before my diagnosis but it would appear to fit the symptoms you have. I also have problems watching panning or zooming out on TV, it disorientates me.
I will keep persevering, after all I was told by a physio 18 months ago that you don't always get better after an injury and she discharged me. In assessment at the Head Injury Centre I was assessed and the visual and balance issues identified. I was referred to a neuro-physio - she identified my muscles in my back were not doing what they should, some were permanently on some were off and the thoracic muscles were doing the work the lower muscles should have done. She gave ne intensive neuro physio for 7 months and reduced my pain from 80% of my day suffering intense pain to around 15%, then referred me to a regular physio - I have now had 6 months of acupuncture which has reduced the pain to possibly just one incident of moderate pain daily. I am now working on getting my posture back to its pre-assault status to avoid future problems. It is my extraordinary success in getting to virtually pain free after being told there was nothing could be done that drives me to find the solution to my cognitive difficulties.
I will be back in touch with the neuro-assessment hospital this week to ask what there proposals are given that I have yet another two specialists giving contradicting opinions. It is hard work as you will know coping with the PCS in itself is a mammoth task without havign to fight the specialists as well to get any treatment.