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  #11  
Old 11-30-2007, 10:58 PM
stillstANNding stillstANNding is offline
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linsky,

I looked at many of your videos and do not think you are a psych case, FWIW. I have 3 movement disorders in a setting of MS and when they appeared I too was told it was a conversion disorder. I do know how you feel about trying to defend or object.

In time, of course, I was correctly diagnosed. I hope the same for you. And yes, there are records at a hospital here that say that in 1982 I was nuts.

Keep fighting for intelligent care,
ANN
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  #12  
Old 12-01-2007, 07:24 AM
linsky linsky is offline
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Thanks Ann for your reply. The Doc's themselves, I feel are 'Psychological' cases many times because they just look at what one so called "Doc" has written and then copies and pastes the very same results into his report.
I am a happily married 50yo. with no hang ups or psych problems whatsoever. I love life and love to have a gsoh.
One real problem I have is that when I try to point out glaring errors in their reports, the Doc's won't even look at them. But the day is still young as yet, because after I have gone down all their routes, I am going to demand a hearing and put a weighty case on the table that they cannot ignore. All being said, they may listen, but what doc's don't like to do is admit their mistakes. There is a common joke here in Liverpool UK regarding the Walton Centre for Neurosurgery and Neurology:- What is the difference between God and a Neurologist? Ans: - God is not a Neurologist.
Obviously not all neuros should be classed like that, but the ones whom want to do all the talking and not listen, will never come to the correct diagnosis.

Best Regards

Linsky

Last edited by linsky; 12-01-2007 at 07:26 AM. Reason: spelling error
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  #13  
Old 01-28-2008, 05:29 PM
GILBERTO GILBERTO is offline
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Default Cervical Dystonia

Linsky/spitball,
I have Cervical Dystonia (Torticollis). It was first diagnosed by my primary, a GP. She reffered me to a Neurologist since it s a neurological disorder. Any competent Neurologist will know what is going on. Usually the first type of treatment is Botox injections into the affected muscles. If this fails the next step is either DBS (deep brain stimulation) or what is called selective denerveation. I chose the DBS surgery after the Botox failed, because the surgery while it sounds scary, holes drilled in your head, it is reverseable whereas the Denerveation is not. If you want more info there are plenty of web sites that deal with Dystonia, or you can contact me at g.oakes@cox.net
Regards,
Gil Oakes
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  #14  
Old 01-29-2008, 11:55 PM
spitball spitball is offline
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Default Hi Everyone

Hi- Have you read anything by Dr.Oliver Sacks? He is well known, and his website is oliversacks.com

I hope any information can help anyone.
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  #15  
Old 02-23-2008, 03:11 AM
Pike Pike is offline
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I am not informed on this and just happened to stop by to see this old post.

I would ask you to get your records after your accident to see what drugs the ER Drs gave to you.

This reminds me of a person that took the wrong meds and their Drs did not see the problem as it was developing ... if this is the problem it seems to be.

It made me hurt to see your spine issues also, I have spine problems and I certainly believe you have spinal issues as well as side effects from medicine.

If a Dr told me that I was faking it and was in your situation I fear I would send the SOB to his maker but God doesn`t take crap so the Dr would become an orphan.

Pike
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  #16  
Old 03-09-2008, 02:34 AM
ainee ainee is offline
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linsky - it's a couple of months since you posted - I wonder how you're going now, and if you've had any luck in finding a doctor who understands your symptoms.
ainee.
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  #17  
Old 03-09-2008, 04:40 AM
linsky linsky is offline
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Quote:
Originally Posted by ainee View Post
linsky - it's a couple of months since you posted - I wonder how you're going now, and if you've had any luck in finding a doctor who understands your symptoms.
ainee.
Hi Ainee, I am moving forward in the right direction slowly. The first Neurologist that said my symptoms were non organic has now come back to me (without me asking) as I was sending DVD's of attacks that I have been having to the Hospital. The reason he came back to me is to show the DVD's to other Neurologists to get their opinion. This sounds like he may be having misgivings regarding his original diagnosis. They had me seeing a "Psych doc", I only agreed to this in order to be seen to be co operating with them. But what I also did, was secretly record the 'psych doc' (twice) and he told me that he could not make a positive diagnosis as I am not anxious or depressed etc. But in his written report, what does he do.........writes a positive diagnosis in that I could have one of three things - conversion disorder, factitious disorder, or malingering. He leant more on the conversion disorder in his written report, but he doesn't know that I have him recorded verbally telling me that he could not make a positive diagnosis. There are also other discrepancies in his written report (or I could even say lies) I have asked to see him again and will be asking some questions regarding the report (I will decide on the day whether I tell him that I have him recorded) I am certainly going to complain to the Hospital in the very near future and am also considering going to the Media.
Over the next couple of days, I will put a link on here if I am allowed, to a clipped and edited DVD that shows different attacks that I have, so if you want to have a look at it you will be able. It will be on google.

How are you keeping with your health?

Best regards
Linsky
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  #18  
Old 03-14-2008, 06:47 PM
Moxy Moxy is offline
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I just registered with this forum and this is the first post that i went too.
I was too originally diag with conversion. In fact i received goverment disablilty with this diag.
But in fact the conversion diag was incorrect. I started having noticeable symtoms at 18 years of age......to make a very looooong story short. I was diag with Dystonina in 2004 and received Botox injections. I was young and very frustrated and became depressed to the point of suicidal ideation and was hospitalized 3 times. I suffered from severe Major depressive disorder, secondary to a physical disease, anxiety, PTSD, puedo seziures and auditory and visual hallucination.
All along I had Dystonia but it became secondary to my mental health and therefore I was treated as though it was pyschosomatic. It was not, I was just very depressed.

Now, i see a therapist 1 a week (court ordered via social security disablilty) and I am being treated by a neurologist that has done one round of botox on me. THe procedure was horrible and I do not think that I will do it again, although my Dr is pushing it.

Being labled as insane or being treated as though your symtoms are for attention is a awful way to live.
I hope that your find peace and strength.

Take Care, Moxy
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  #19  
Old 03-15-2008, 08:14 AM
linsky linsky is offline
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Default psychogenic or real

Thanks for your reply Moxy. With these Neurologists, I find some of them thinking that they are gods and cannot make mistakes, therefore when a mistake is right in front of there eyes, they can't believe it and therefore carry on there incorrect diagnosis.
I have one Neurologist who is re visiting my case but because the way the psych doc has lied about me ( I secretly recorded our conversations and I have him actually lying...I was staggered that I have the proof on tape) I want to make an official complaint about him, but was wondering if the Neuro who is revisiting my case may, despite his possible new findings actually support the psych doc. ( most of us are well aware that doc's stick together).
I feel really let down by the Hospital and am unsure what to do. I have many hours of video of some of my attacks. If you get a chance have a look at
http://video.google.com/videoplay?do...53142007996693
There are a few different videos on that site with different things happening.
See if any are familiar to you.
Best Regards
Linsky
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  #20  
Old 03-15-2008, 03:03 PM
teaandtoastgirl teaandtoastgirl is offline
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I came across this post yesterday and saw that it was apropro to the discussion here. http://abcnews.go.com/US/story?id=4438095&page=1

For anyone with a movement disorder, a gluten free diet should be considered. Emerging research in the past decade suggests a close correlation between movement disorders and gluten sensitivity.

Having had truncal dystonia most of my life and having developed multi-focal dystonia in the more recent years, this information is invaluable. I am in remission on a gluten free diet which I began in Oct '06. For further understanding view the Gluten Sensitivity/Celiac Disease section on this forum; back out to Specific Neurological Conditions (A-L) scroll down to Gluten Sensitivity.

Most people with CFS, Fibromyalgia, MS, Parkinsons, Dystonia, Ataxia, Myoclonus, to name just a few will find improvement with a dietary change such as this. Gluten is the protein found in wheat, barley and rye.
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