Patients Focal dystonia
Topic of the discussion
Posted on 3/17/19 10:59 PM
I have been receiving botox injections for cervical dystonia now for going on 5 years. After the initial injections I could feel the positive results and about the 9 month mark, I finally was seeing and feeling the results - that I feel - were the height of the benefits, which through rehab, medications/alternative treatments, and stress management, I have worked to maintain.
However, I feel like within the last few weeks, after my most recent botox injection, I am getting muiscle twitches much more often and that positive effects are not as prominent as they usually are.
Beginning of the discussion - 4/18/19Botox injections loosing results? https://www.carenity.us/forum/focale-dystonia/treatments-for-focal-dystonia/botox-injections-loosing-results-853
Posted on 4/18/19 5:05 AM
Does anyone have any input? If you opted to no longer us Botox, why? and why do you use now for the spasms and twitches? What about pain?
Posted on 4/20/19 2:53 AM
I have just found out I have Cervical Dystonia, and will be getting my first Botox injection’s May 15 th, I’m pretty dumb about sll of this, had never heard of it until this past Tuesday, guess i’m kinda scared, sound’s like it will be a battle for year’s to come
Posted on 4/28/19 4:28 AM
@Hidden username Sorry to hear about your recent diagnosis, but glad you found Carenity and can communicate with others who have the same condition that can relate to you and offer advice and support.
I would recommend checking out this newest discussion on going where members are talking about CBD and Kratom for pain and muscle spasms: https://member.carenity.us/forum/treatments-for-focal-dystonia/cbd-for-muscle-spasms-902
Also, I would recommend for you that if you have questions or concerns about a specific topic that has not already been discussed in the forums, to make your own personal discussion for any, and each, question or concern you have so members can speak directly to you and give encouragement, support, and advice! You can create a new discussion by clicking the green "Create A New Discussion" button under the forum title.
After your treatment, come back and let us know how it went. Since you are newly diagnosed, I encourage you to create your own new discussion in the "Living with Focal Dystonia" or the "Treatments For Focal Dystonia" and provide updates with your experience with major events, treatments, exams, etc. Since you are newly diagnosed, there will be a lot of "new things" where you can share and help others in the future that are newly diagnosed to understand better these events that occur for most all focal dystonia patients early on in diagnosis. Maybe title the discussion, "Newly diagnosed and Updates" or "Newly diagnosed and Treatment Updates." Completely up to you, but just a recommendation - other members can then go to your discussion and provide advice and support for your journey.
Hope this helped. All the best!
Posted on 4/28/19 10:23 PM
@Hidden username I had good results when I started. I just recently had it start wearing off or me not really feeling any effects and actually feel like my spasms/pain is getting worse, but not worse than it was 5 years ago. No.
You feel lighter once the botox kicks in.