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  • Share your first signs and symptoms of cervical dystonia
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Living with dystonia

Share your first signs and symptoms of cervical dystonia

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avatar exit

Unregistered member

02/15/2019 at 11:33 PM

I am curious as to the first signs or symptoms anyone with cervical dystonia remembers having. 

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avatar Foxyfoxm

Foxyfoxm

04/28/2019 at 10:45 PM

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avatar Foxyfoxm

Foxyfoxm

Last activity on 05/23/2019 at 10:37 PM

Joined in 2019


15 comments posted | 15 in the Living with dystonia group

1 of their responses was helpful to members


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@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.. 


Share your first signs and symptoms of cervical dystonia https://www.carenity.us/forum/other-discussions/living-with-focal-dystonia/share-your-first-signs-and-symptoms-of-cervical-dystonia-769 2019-04-28 22:45:17

avatar mvmentme

mvmentme

04/29/2019 at 12:54 AM

Good advisor

avatar mvmentme

mvmentme

Last activity on 10/13/2019 at 5:55 AM

Joined in 2019


27 comments posted | 15 in the Living with dystonia group


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@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.


Share your first signs and symptoms of cervical dystonia https://www.carenity.us/forum/other-discussions/living-with-focal-dystonia/share-your-first-signs-and-symptoms-of-cervical-dystonia-769 2019-04-29 00:54:17

avatar Foxyfoxm

Foxyfoxm

04/29/2019 at 1:00 AM

Good advisor

avatar Foxyfoxm

Foxyfoxm

Last activity on 05/23/2019 at 10:37 PM

Joined in 2019


15 comments posted | 15 in the Living with dystonia group

1 of their responses was helpful to members


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@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. 


Share your first signs and symptoms of cervical dystonia https://www.carenity.us/forum/other-discussions/living-with-focal-dystonia/share-your-first-signs-and-symptoms-of-cervical-dystonia-769 2019-04-29 01:00:11
avatar exit

Unregistered member

05/27/2019 at 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? 


Share your first signs and symptoms of cervical dystonia https://www.carenity.us/forum/other-discussions/living-with-focal-dystonia/share-your-first-signs-and-symptoms-of-cervical-dystonia-769 2019-05-27 00:54:44
avatar exit

Unregistered member

05/27/2019 at 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. 


Share your first signs and symptoms of cervical dystonia https://www.carenity.us/forum/other-discussions/living-with-focal-dystonia/share-your-first-signs-and-symptoms-of-cervical-dystonia-769 2019-05-27 18:04:31

avatar mooshroomlady

mooshroomlady

06/21/2019 at 3:29 AM

avatar mooshroomlady

mooshroomlady

Last activity on 01/16/2020 at 4:09 AM

Joined in 2019


6 comments posted | 2 in the Living with dystonia group


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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.

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Heather R Mellott


Share your first signs and symptoms of cervical dystonia https://www.carenity.us/forum/other-discussions/living-with-focal-dystonia/share-your-first-signs-and-symptoms-of-cervical-dystonia-769 2019-06-21 03:29:49
avatar exit

Unregistered member

06/28/2019 at 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


Share your first signs and symptoms of cervical dystonia https://www.carenity.us/forum/other-discussions/living-with-focal-dystonia/share-your-first-signs-and-symptoms-of-cervical-dystonia-769 2019-06-28 20:08:38

avatar CrystalGiles

CrystalGiles

08/06/2019 at 6:40 PM

avatar CrystalGiles

CrystalGiles

Last activity on 11/07/2019 at 8:09 PM

Joined in 2019


1 comment posted | 1 in the Living with dystonia group


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@GCDavis contact ipsen cares to pay the copays. I hope you can continue to get the treatment you need..


Share your first signs and symptoms of cervical dystonia https://www.carenity.us/forum/other-discussions/living-with-focal-dystonia/share-your-first-signs-and-symptoms-of-cervical-dystonia-769 2019-08-06 18:40:44
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