Karen B's Page
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Hi Lexiesmom,
cancelled because toronto Western said "conversion Disorder" s . Any doctor who has looked at this tends to agree that it's conversion.. We met with a conversion specialist in London Ontrio last week. He said that 85% of patients who...
Elaine,
We Had our appointment in London Ontario today with a Dr. who specializes in Conversion disorder. He told us that our Daughter Does NOT have conversion Disorder, in fact he is quite upset that all the doctors have left us hanging only bec...
Elaine, this is so frustrating to me, but unfortunately we are in a similar situation.
I have finally found a doctor in London ontario who specializes in 'Conversion Disorder"-I am told by his assistant that 9 times out of 10 the patient does NOT...
Elaine,
We are going thru this hell with our 17 year old daughter-trouble is with us all the drs are aware of the dx for conversion disorder, and all have literally left us in our tracks. we have been to Toronto Western, London University, and bac...
Beka,
Kelby has been selling the round bumper magnets(all money donated back to Dystonia)-its nice to see so many vehicles around our small town with Dystonia"Robbing the Freedom to Move". She has talked about it in school, done research for her B...
Beka,
You were right about the show...I love MJF and find him an inspiration to many, I just wish that they focused a Little More on Dystonia(do you think she has the Gene) it didn't even talk to that--I am thinking she does. You need to get on a...
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- N3Y 3V4
- More about me (my health interests and reasons for joining WEGO Health)
- My 16 year old has generalized dystonia, right leg turned in towards left leg. Her teen years are being rob bed because of Dystonia. She was scheduled for DBS Aug 18, but it was abruptly stopped Aug 14 and put on hold until they do more research on her ie: sleep apnia and low iron counts???
Comment Wall (3 comments)
- At 11:24am on August 19, 2008,
ImBlessed said… - Hi Karen, I wish I could add more insight, but I am very confused about my situation right now. The doctors can't seem to diagnose dystonia on the first try. It's just like when Fibromyelgia came on the scene, they told people it was all in their heads too. Now 20 years later, they have a medicine to treat it. My sister suffers from Fibromyelgia, so I know what she went through. Anyhow, I'm seeking a second opinion, actually a third opinion, and will see what happens from there. May God Bless you and bring healing to your daughter.
- At 8:46am on August 18, 2008,
Adrienne said… - Welcome to WEGO Health, Karen. I want to encourage you to join the Dystonia Group here.
- At 9:47pm on August 17, 2008,
Karen B said…
- My Daughter's DBS was abruptly put on hold, while the Nuerologists do some more tests on her...They are now thinking that her Dystonia could be related to a Sleep Disorder. This is strange to us, as we have been dealing with this for well over a year now and she has had several botox injection, been on Artane as well as Tetrabenazine..and nothing is working...Now they are talking a sleep disorder, or her sub-conscious causing this issue. We are o.kl. with DBS being put off, but we are just concerned that they are going to try to pin this on her. She is 16 and just want's to walk without crutches or a whellchair, she wants to work like her friends, and dance again. Has anyone had their Dystonia linked to a Sleep Disorder?????
lOOKING FORWARD TO YOUR THOUGHTS
Karen B
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