[aesedai]

Hi guys, new girl here. I've seemed to have stumped my doctor and I"m wondering if any of you can point me to a possible "label" or at least tell me I'm not crazy and you've heard of this too.

Ok, here goes.

Short history: On 4/4/12, I was coming back from a lecture, walked into the engineering building when a tall (~9 ft) solid/thick metal beam fell forward and hit me on the head and neck (left side, middle and back). Symptoms increased over a period of days.

I have a lot of symptoms and I"m being seen at a concussion clinic so I"m going to focus on the ones that stump the doctor and seem to possibly be separate from PCS.

Pain in neck that gets worse throughout the day (pain starts in the upper middle, then works its way up causing a headache and down, causing a backache). MRI head/neck was negative

Electric like, tingling in arms and legs (right side more affected)

Touch can often be felt in more than one place, especially a light touch. My head is the worse, I feel that as a rushing/spreading tingling sensation straight down to my toes. Brushing one arm causing both hands to feel the same tingling. Touch around my breast/chest affects my stomach and leg down to my toes. This is/has gotten worse since the accident.

At this point I don't want my fiance to touch me and nursing my daughter is becoming an issue.

Last but certainly not least, is the jumping/twitching. The technical term the doc gave for it was myoclonus (which I might be misspelling). At first it was a random twitch in my arms and legs after I was asked a question or thinking about something. And now they come at any time, are more violent and have involved my legs while I'm standing (which leads me to be concerned about falling one day).

Oh and now I've had several (5 or so thus far) episodes of extended twitching. I feel like a fish out of water -- arms and legs jerk together several times in a minute. My vertigo and tingling usually get worse and very uncomfortable before this begins and when the twitching starts to die down, I need to move around (since I feel like I'm moving anyway when I'm not).

EEG showed no abnormal activity.

Hate is a strong word, so I'll say I really dislike my doctor, who after telling me to close my eyes and hold my arms out dropped a trash can on the floor or banged it against the wall, making me jump and scream, scaring me half out of my wits. I lost a week or two worth of progress after that.

I got my primary care to refer me to an epilepsy center (she doesn't know what to do with me), the trash can doc a) must not have believed me to pull that stunt and b) admitted that he was stumped after that and I'm not sure if the extended twitching are seizures and if it's connected to the touch felt in multiple places anyway.

And when I write it all out and think about it this way, I want to cry. The good news is I could type this message with minimum pain and only some numbness and only a few breaks, so yay for improvement!

[HeadStrong]

Hi aesedai, welcome to NeuroTalk. You will find a lot of support and good advice here. I just wanted to touch on the tingling feeling. I had a blunt trauma to the head injury back in Oct of last year and fell in December hitting my head again.

I have experienced the tingling even a heavy/weak type sensation in my arms/hands and have also developed a hypersensitivity to pain. Even my cat jumping up on me unexpectedly can cause pain. Yours sounds a bit different since it seems to spread.

The twitching is another thing I experienced and was controlled somewhat by the anti-seizure meds I was put on in the beginning.

Others will be by to give you better advice, just wanted you to know you are not crazy and def not alone.

Keep us updated on your progress.

[Mark in Idaho]

aesedai,

Welcome to NeuroTalk. Your experience with doctors is not uncommon.

My first suggestion for you is to try icing your neck and back. The progression through the day may be due to an increase in inflammation.

The clear MRI does not mean your neck and spine are not injured. You may benefit from an exam by an upper cervical chiropractor (www.nucca.org). The minute injuries and the inflammation they can cause is not easily imageable.

A good physical therapist may be able to help with some gentle traction and
spinal manipulation.

Avoid chiropractors who want to do a 'twist the head and pop the neck' type of adjustment. It is probably too aggressive.

If you learn how to take better care of your spine with posture, icing, and how you move about, it may start to heal.

It is amazing how the symptoms can be really strange and all of a sudden start to resolve without understanding why.

With some informed question to your doctor, you may be able to get some appropriate treatment and recovery.

My best to you.

[Cjm028]

I would hire a lawyer sue the school

[aesedai]

Hi Mark,

Thanks so much for the link. The locate a doctor didn't find any close (I'm an hour away from Philadelphia) but you reminded me that I was considering visiting a neurological chiropractor (I did find one of those nearby). Maybe that will help -- of course the doctor wasn't a fan of that idea.

I'm all for my symptoms mysteriously going away!!

Thanks for replying.

[aesedai]

Originally Posted by HeadStrong

Hi aesedai, welcome to NeuroTalk. You will find a lot of support and good advice here. I just wanted to touch on the tingling feeling. I had a blunt trauma to the head injury back in Oct of last year and fell in December hitting my head again.

I have experienced the tingling even a heavy/weak type sensation in my arms/hands and have also developed a hypersensitivity to pain. Even my cat jumping up on me unexpectedly can cause pain. Yours sounds a bit different since it seems to spread.

The twitching is another thing I experienced and was controlled somewhat by the anti-seizure meds I was put on in the beginning.

Others will be by to give you better advice, just wanted you to know you are not crazy and def not alone.

Keep us updated on your progress.

Thanks for the welcome. Do your doctors/therapists say the twitching is a PCS thing that should improve? Has it stayed or gotten worse since October? Have you also had any extended/prolonged episodes of twitching?

I've heard bad things about anti-seizure meds, including that they tend to slow down mental processes. I am (was? *sigh*) an engineering PhD candidate and I'm concerned about *anything* that could slow me down more since I want to get back to my research.

Of course, even if my mind is sharp again, I can't work in the lab if I can't predictably control my movements.

Ah well, it's a moot point, until/unless I let this situation force me to wean my daughter early.

Thanks and sorry for all the questions.

[HeadStrong]

aesedai, my twitiching was due to my injury and it eventually did go away while on the medicine. Just to clarify my twitching was fast jerky movements not prolonged episodes. Hope that helps.

Originally Posted by aesedai

Thanks for the welcome. Do your doctors/therapists say the twitching is a PCS thing that should improve? Has it stayed or gotten worse since October? Have you also had any extended/prolonged episodes of twitching?

I've heard bad things about anti-seizure meds, including that they tend to slow down mental processes. I am (was? *sigh*) an engineering PhD candidate and I'm concerned about *anything* that could slow me down more since I want to get back to my research.

Of course, even if my mind is sharp again, I can't work in the lab if I can't predictably control my movements.

Ah well, it's a moot point, until/unless I let this situation force me to wean my daughter early.

Thanks and sorry for all the questions.

[ginnie]

Hello and Welcome to Neuro Talk. I am sorry this happened to you, but glad you found this site. I hope alot of people will respond to you. If I were in your shoes, I would go for more help medically. Just because one doctor or two have tossed up their hands, don't give up. There are doctors who understand these issues regarding TBI. If you are nursing a child you are young, and that does work in your favor for recovery. I hope there will be some folks to help direct you to better medical attention. It also sounded like your former doctor didn't have alot of compassion. This site has an abundance of that. I know how difficult it must be for both yourself, your child and husband. Draw together for comfort and seek better treatment, and or diagnosis. I hope you heal, and recover all the way, so you can resume a good life with your family. I will keep you in my thoughts and prayers. Again a warm welcome to you. Your husband can also post anytime for help and support. ginnie

[Mark in Idaho]

aesedai,

I would not be concerned about the anti-seizure meds slowing your cognitive processes too much. They may help you set a mental pace that will actually improve your ability to do you research.

What kind of research are you doing?

Or is it secret because it will end up with some patents?

[aesedai]

Originally Posted by Mark in Idaho

aesedai,

I would not be concerned about the anti-seizure meds slowing your cognitive processes too much. They may help you set a mental pace that will actually improve your ability to do you research.

What kind of research are you doing?

Or is it secret because it will end up with some patents?

My research is electrically conductive polymers (plastics) but I haven't been back to school since the accident. I'm not able to drive or handle crowds/fast movement/too much visual stimulation, etc etc. I'm getting better with light, noise and reading at least.

I'm not sure what you mean about setting a mental pace that would help. One known side effect is slowing down mental activity. That's something I'm fighting to get back!