Introducing Gearhead201

General
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To start I have not to date been diagnosed with anything other then symtoms. Well, I did get told from a neurologist, "I can see you genuinely have a problem and I believe you need to seek psychological help for it."

My story starts several months ago with an injury at work where I was hit on the top right side of my head, while I was facing straight up at something. Due to the facts, I am unsure how much I can talk about since I am still in the middle of lawyer battles, so will be a bit vague on those details. Will not however on the symptoms or emotional toll.

I have from the day after (less then 24 hours) been dealing with an inability to maintain my balance as I walk, total control of the leg movements (more so on the right), falling down to my knees, spasms of the right leg and arm, twitching in the neck (simular to what I have seen looks like Parkinson's), difficulty in handwriting, I am told from my wife that I slur sometimes, short term memory issues, problems sleeping (body on the right side spasms and feels ready to run the 100 mile relay), nasty headaches (lasting upwards of 7 days at a time), and a mass of nightmares possibly stemmed from the plethra of medication I have fallen guinnea pig to.

I have 6 very loud, obnoxious and outgoing children (just like I used to be). I am married. Have a bunch of cars and trucks (I cannot drive anymore). A mortgage and pets. I have 3 college degrees in the automotive field. I love cars and love to work on them, every aspect, painting, fabrication, performance, mechanically, electonically. I have done alot on cars ever sense I was a kid helping my grandpa I have loved cars. I think I have passed my love of cars onto my 2 youngest boys too, my 4 year old used to love going out in dads Vette for a drive and tells me daily still that he will have one also when he grows up. For the most part the all American dream of wants.

I have been to several different neurologists (one was nice enough to say, "I can see you genuinely have a problem and I think you need to seek psychological help for it."), a neurosurgeon who told me if he had a guess I have suffered from a spinal cord sprain caused from a pretuding disc in my c3-c4 vertebrea. My personal favorite to date is the neuropsychologist I got sent to by the company lawyer.

I have endured 2 CT scans of the head, a MRI of the head upon an ER visit, and a MRI of the head, neck and thorax. All scans show I have a normal head ( haha ), only negative was the disc at c3-c4.

After getting news I was crazy from one doctor and another telling me that I should just,"Knock it off and go back to work.", I had had enough. I have been called alot of other things that were more deserving then what these 2 doctors have implicated. I decided to take my health into my own hands and went to the net and started looking up my symptoms online I happened upon the Mayo Clinic website describing Ataxia and another that had a video of a person with Ataxia doing his best to walk. I immediately shared the websites I found with my wife and family. After we all agreed this is at least something we can try to eliminate from the list of possible diagnoses I went back to the occ health doctor with information about this and was told very shortly that there is no way I have this, because the hit on my head was not severe enough and my CT's and MRI's show no damage to my brain.

OOps missed a time line in the middle there, the neurosurgeon told me that PT would be helpful, after I asked, and wrote a script. The first day at PT the owner of the facility I chose to do my therapy was talking to another therapist describing me as someone who has an gait resembling an ataxia she had worked with years before. I have alot of pride and was very well convinced there is noway that can be it. So I blew it off at that moment. The main therapist wrote a letter to the neurologist, who told me I was crazy, describing my symptoms with her idea of ataxia. He didn't even read it. Therapist also wrote a letter to the other doctor, who told me to knock it off. He told me she was not a doctor and her diagnoses was amatuer, inaccurate and she had brainwashed me with this idea of ataxia. Now back to the timeline already started.

I was visiting the doctor to get a rewrite on the PT script since the previous had expired. Well I didn't get new script and was told again there was no reason for any of my symptoms. This is when I got the brush off for awhile after a loud heated arguement about my health and how it was bing handled from me.

The company decided that a lawyer needed to set up an appointment for me to visit a neuropsychologist. I went I took their memory test andanswered their questions. This was the first appointment I had been to I could not get the results of the tests, odd right? Not as I have found out.................

I put my family doctor on the job and he sent me to a neurologist that had a vague answer, but I was not satisfied with it so I requested a referral to the Mayo Clinic. Before the end of this year I will be there and God help me I get some answers. I just want to go back to working and making money and tinkering with my toys (my cars and trucks).

Anyway, still the same issues, I hardly leave the house. When I do it seems such a chore just to walk to the vehicle to be driven anywhere. I hate depending on people for anything. I don't like the looks I get when I do leave the house.

Well that is a shortened version of my story to date, my story seems to still be writing itself.................

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Hi Gearhead201,

as first search results on pubmed i could find, that you could have experienced a "traumatic head injury". This can cause also cerebellar symptoms including a sort of ataxia.

Rehabilitation is possible.

Neurological Outcome Scale for Traumatic Brain Injury (NOS-TBI)

provides an additional information for your doctor by orientation regarding the severity of your head injury. When you scroll down the article, you will find a sort of check-list for your symptoms by which your neurological functioning could be measured at first sight. This could give a name and a frame to your symptoms, hopefully improving the acting of your actual doctors. Maybe also a nurse or similar professional can help you to accomplish the scale-sheet.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2943506/

"This scale offers

(1) a cost-effective, brief, practicable, standardized, and quantifiable method of communicating and analyzing neurological deficits in a way that traditional neurological assessment alone cannot currently provide, and

(2) a measure that non-physicians can administer.

The NOS-TBI may serve a role in clinical practice in patients with TBI similar to the way the NIHSS has functioned for patients following stroke, by serving as

a tool for initial stratification of injury severity,

and as an outcome measure in clinical trials."

Good Luck!

Kind regards,

Akita

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http://www.ncbi.nlm.nih.gov/pubmed/20473090

This report - link above - tells about successful rehabilitation also of a man who started Reha 10 years after his severe traumatic brain injury. As your injury probably is not as severe as his and you are earlier reacting, you should have really big chances being able to run fast and similiar tasks.

Akita

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In this moment it comes to my mind that i also could have experienced a traumatic brain injury, when falling right on my head in May 2011. Afterwards i was not able to move much, - was very slowed down; not able to leave house for a week and similar things. Maybe there are rests of that in my brain (and symptoms) and i should ask for some rehabilitation counselling?

Reflecting..

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Hi Gearhead201,

it s up to you what to do next.

As your neurological testing in the Mayo Clinic will be only in the end of December, you have got some time before Christmas.

Please consider to show this thread with all the documents in the links to your physician and/or to any other person interested in your fast recovery and wants to help you with that, so that they can read these and give you extra advice. Maybe you can get faster help now without losing your right to go to the Mayo Clinic in the end of December.

Have a good time!

Akita

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"A man who i able to confess that he is vulnerable has done already half the job of his rehabilitation..."(this is from me nonsense or not, hopefully giving you some further strenths to cope with your nasty situation).

i have to apologize for not having read your letter in the whole..

As you have already reported that a neurosurgeon first guessed that you have suffered from a spinal cord sprain caused from a pretuding disc in my c3-c4 vertebrea. He could have been right, as your scans where negative for the "disc at c3-c4".

" cried when the nerusurgeon told me if I am dealing with a sprained spinal cord I would more then likely be messed up for 2 years or more."

That s understandable because as i understand this could mean a big disaster for your and for your family, financially and related to your health. You really where unlucky with this accident and hopefully you will get full financial compensation for it.

What regards your further treatment, a date in a reputated clinic could really be helpful there. But i myself am in sort of your situation, but not as unhappy as you. Also in my case the neurologist i consuled a week ago could have been right when telling me that in his view i would not be atactic. I also have experienced a similar, not so hard injury on my head in May 2011. After that my symptoms aggravated. My situation could differ from yours in the respect that my spinal cord could not have got a damnage- only the head. And that i had gait disturbancies also before this accident, and the accident and the symptoms caused by it only additionally occured. Now i have the problem to get a diagnosis which puts the two diseases into two parts - the accident part and the atactic part.. I have also a sort of ataxia. I was in the clinics and the doctors demonstrated my gait to a student, telling that this was a "cerebellar gait". And i have this stomping walk and swallowing problems and dysarthria which i contribute to ataxia. But there are also other symptoms perhaps coming from my bad fall in 2011. This morning i have written a long email to the lady who runs the Viennese Self Help Group for traumatic brain injuries and asked her to forward the email to somebody you could help with a fast diagnosis, if she knows one.

Consulting the new book on Ataxic Disorders i found an article by S.H. Subramony "Approach to ataxic disease" in which he makes a difference between people "presenting with gait and limb coordination problems". They "may have other types of neural lesions as the basis for this." So in my view you could have walking problems that look like Ataxia, and ordinary people or the physiotherapist who worked with an Ataxia patient could find, that you would have Ataxia, but this is not right in the medical way. You can exclude having an Ataxia.

What concerns your physiotherapy, i don`t know if the therapy offered to you would be helpful or not..This therap is surely not specific for your problem.

Two years of struggle with the spinal cord damnage is much (but somehow the good message that you would not be forced to wheelchair,and that there would be some therapies for it.)

For me it would be important to keep my nerves.

Supposedly they want to send you to the psychologist for that..?

Other solutions would be those of self help actions as you have already started:

What you unfortunately have got is frequent, caused b industrial revolution on the workplace etc.

There have been experiences with stem cell treatment, see

http://www.sciencedirect.com/science/article/pii/B9780444595447000123

Maybe you want to contact the researchers of the phone contact on the bottom of the page and ask for details.

There have been a lot of investigations for that condition:

Essentials of spinal cord injury : from basic research to clinical practice

Fehlings, Michael.

2.

Managing pain : essentials of diagnosis and treatment

Brummett, Chad M; Cohen, Steven P (Steven Paul),, 1963-.

3.

Medical-surgical nursing : patient-centered collaborative care

Ignatavicius, Donna D; Workman, M Linda.

---
Acupunture has found to be helpful
You could search for specialized patient forums and ask there, e.g.
Kind regards, good luck!
Akita

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I too am a gearhead. Not being able to drive my toy sucks. It needs to be changed too an automatic trany. I found a nice hand control made by Menox ( Google Menox ) this eliminates the need for legs. They will sell to an individual so you can install yourself. Cost about 1400.00. As far as people looking at you, I went through that. In enough time you will stop caring what they think. I was officially diagnosed this summer and everyday you learn to concentrate more on all the positive things in life. This afternoon my wife and I are going to a wedding, I got a walker to get around and I am not afraid to use it !

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Gearhead201, I was in a car accident shortly after my ataxia symptoms started to appear and went through the whole lawyer thing. Then they didn’t know for sure I had spino cerebellar ataxia. Now, with no positive lab results, only symptoms I’m pretty sure I do. My mom had ataxia. Later in life. Whatever the result for you, be sure to protect you psychological health. Depression is worse than the symptoms of you injury and sneaks up on you when you aren’t aware of it. I had depression at first and now have good energy and a good outlook. Not knowing will get you down so don’t invest too much energy in what the docs say. When it comes to the brain they know very little. I’ve been to the best all over the country over a 12 year period and still they can’t find a test that comes back anything but normal. Of course observable symptoms say something else. Find a doctor you trust and don’t listen to the company docs. They are there to tell you you’re ok when you aren’t. Hope you have disability insurance through work and check out your rights to collect social security disability. It could be a while before you recover so don’t make it any harder than necessary. Go somewhere warm and take a vacation to get away from all the stress. Even a short trip will help your spirit . Good luck

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Hi Gearhead201, I don’t have any medical education, but as a laywoman, it sounds as though you’ve suffered a traumatic brain injury on the right side of you head, hence the "ataxic’ symptoms on the right side of your body. The neurologists you saw made some very insensitive comments. Thankfully, you’re going to Mayo where you can hopefully get answers and treatment you deserve. As far as what other people think, I agree with others. Do whatever you need to do to get around comfortably. I’ve had sporadic cerebellar ataxia (non-hereditary/unknown cause) almost nine years now, and due to falls, started using a cane 1 1/2 years ago. People I don’t even know have been very kind, holding doors open etc. One guy was on his cell phone and opened my car door, as I had a takeout bag in one hand and my cane in the other…,ha! Best wishes to you… ;o)

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Rose: "I don't have any medical education, but as a laywoman, it sounds as though you've suffered a traumatic brain injury on the right side of you head, hence the "ataxic' symptoms on the right side of your body."

That s wonderful! i have read it in a neurologic book recently, which i have borrowed from our library. Its very interesting that there seems to be a correspondence between the side of of a brain lesion and imbalance problems. In my case, i fell just right on the middle of my forehead, and i have got the vertigo on both sides, but never at one time: Two days ago i watched my tiny vertigo impulses: first on the left for three times, and then two on the right side. This was while i was walking. i could compensate this by changing the lenght and the velocity of my steps. This functions only when i am not going fast and the vertigos are not too heavy. Actually i usually use only my shopper to help me for balance out my vertigo. Some weeks ago i had additionaly a sort o jerks - unvoluntary, unexpectedly fast movements of my legs inwards. There i needed additionally a cane for walking ,because of the danger of falling. Since Carbamazepine this latter mentioned problem has stopped. i have got some side effect from the Carbamazepine what is a pity, but the med is worth them, - and it does also other jobs.. But it is not for everybody, there should exist also other medicaments to improve the walking/vestibular system (when i have understood rightly). i am now convinced that also such problems should be subsumed under "Ataxia". Thanks, dear Rose.

"staggering vertigo" "swaying vertigo"

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You’re welcome Akita. I don’t know much…,ha!..,but putting two and two together made sense to me! Ataxia is somewhat of a mystery, although I realize there is truly a science behind it! I keep searching for answers, as it keeps me out of trouble…,ha! Seriously though, I’m interested in knowing as much as I can, and applying it to myself and others! Sounds as though you do the same. Hopefully, it helps, as what goes around, comes around! Someday they’ll be a cure for this, but in the meantime we can support each other! ;o)

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Yes. And when we frogs in the pond struggle altogether one day we will sit on butter!

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Hi Gearhead201

I was diagnosed in June. I went to physio and then she suggested that I contact my gp and get gym on prescription which gives me 30 hr sessions with a personal trainer, to build up my leg muscles and help my balance. I hope you find this helpful. do you drive an automatic car or manual?

Good to have you on board and also why not join your local ataxia group. hear from you soon

Metal Micky

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Sorry for i cannot understand your american english. But surely its fine what you have written.

akita