Patients Focal dystonia
Posted on 4/28/19 10:30 PM
@Foxyfoxm did your cervical dystonia start from the car accident? Or did you already have symptoms but it became worse?
Posted on 4/28/19 10:45 PM
@Dyston!a Hi I had never had symptoms until after my accident. I was t-boned on my drivers side. My doctor said it usually is from genetics or some trauma..
Posted on 4/29/19 12:54 AM
@Foxyfoxm definitely understand your concerns and agree if it is manageable without then that is best.
So sorry to hear about your accident. Mine was genetics. That is good that your neck is not stuck. My neck is tilted to the right like leaning, not center with collarbone.
Posted on 4/29/19 1:00 AM
@mvmentme Have u always had signs of it then since birth or did it come on later in life?
Mine has def started leaning to the right but I do lots of PT exercises and I’m really trying to fight it but who knows how it will turn out.
Posted on 5/27/19 12:54 AM
I am newly diagnosed with cervical dystonia. I guess I’ve had it for a few years but did not know what was wrong. Mine started about 3 years ago with neck tremors then I had a hard time turning my head to the left. Now when I turn it that direction, it keep turning and kind of sticks to my shoulder. My symptoms have gotten much worse the last few months then I received the diagnosis. I’m not seeing a neurologist since we only have 2 in my town and they take forever to get in to see. I am going to an MD of physical medicine and rehabilitation. I got my first Botox injection 6 days ago and am starting to get nervous that it may not be working. How long do they normally take to give some relief?
Posted on 5/27/19 6:04 PM
My first symptom was my head twisting to the right. No botox yet as its taking forever to get into see the one doc in the area that does them.
Posted on 6/21/19 3:29 AM
My dystonia started from a face infection and Lyme disease. Still trying to get final answers as I one keeps blaming the Lyme and infectious disease says it's not Lyme. 2 yrs, no treatment other then a bottle of valium. I don't know what to do, spasms are getting worse esp in neck causing throat to feel tight.
Posted on 6/28/19 8:08 PM
Try going to a neurologist if u can they have me on valium, baclofen,and tramadol but Botox shots are the treatment I'm not looking forward to it but it really sucks I went to the doctor a bunch of times and they finally found it Don't give up Sweetheart
Posted on 8/6/19 6:40 PM
@GCDavis contact ipsen cares to pay the copays. I hope you can continue to get the treatment you need..