Anyone dealing with Dystonia?

Hi @matttheschmatt,

Welcome, and thank you for posting your question on Connect. We have a few pst discussions on various forms of dystonia which might interest you:

– Anyone else have cervical dystonia? https://connect.mayoclinic.org/discussion/kaia-hi-kaja-this-is-kevin-kelley-just-read-your-post-on/
– Dystonia - triggers that suppress symptoms of dystonia: https://connect.mayoclinic.org/discussion/dystonia-triggers-that-suppress-symptoms-of-dystonia/
– cervical dystonia: https://connect.mayoclinic.org/discussion/cervical-dystonia/

I'm tagging @cbuss @Kaia, @netfun2011 @kevinkelley @shenaaz @lo @paulm @ycarney @jpoffo @nissa @sweetheartsdance @tmnm @helpinghand @bjmiller, with the hope they will return and share their insights, too.

Here is some information about dystonia care at Mayo Clinic:
http://www.mayoclinic.org/diseases-conditions/dystonia/dystonia-care-at-mayo-clinic/ovc-20163833

@matttheschmatt, have you considered trying deep brain stimulation? Besides botox, how are you currently managing the pain?

My dystonia slowly began about12-14 years ago as blepharospasm and vertical dystonia. Luckily Mayo's Jacksonvile successfully used botox in both areas. At that time my neurologist told me the best thing I could do is to get involved with the Dystonia Medical Research Foundation headquartered in Chicago. That is where the best research is posted and a wonderful place to get involved with support groups and advocacy. I have been a congressional advocate for dystonia for 11 years now and it just seems that all of us in the advocacy seem to go better and better. We are advocating for a CURE!
The more you are engaged in the Dystonia Advocacy Network, the more you learn and get better. We do not want anyone else to suffer like we do.
Most of us donate our brains for research as well as join into clinical trials. You'll find new friends that understand you and also have a lot of fun with them.
I love our group and what we do...THE CURE IS MUCH MORE IMPORTANT THAN MY LIFE WITH DYSTONIA, ANYTHING I CAN DO TO CONTRIBUTE TO THE CURE AND AWARENESS OF THE RARE DISEASE I WILL DO...JOIN IN.

@101082101082

You are making a great contribution in advocating for Dystonia, not just for yourself but for future patients! It certainly feels good, doesn't it?

Is there anyone else in the group part of the Dystonia Advocacy Network? Would you like more information from @101082101082 as to how to get involved?

@cbuss @Kaia, @netfun2011 @kevinkelley @shenaaz @lo @paulm @ycarney @jpoffo @nissa @sweetheartsdance @tmnm @helpingh @bjmiller and @matttheschmattIs

If so, let's hear from you!

Teresa

My 5 month old son was diagnosed a little over a month ago with Dystonia. They have done an MRI which shown a delayed mylenization. His was still as if he were a newborn. They did blood work which shown everything to be okay. Spinal fluid was good. Genetics testing was okay. But we still have no answers as to why he has Dystonia. Or what to even expect in the future... I wanted to get a second opinion with a different neurologist but because he is so little, no one will see him. Children’s mercy is the only option and that’s where we have been. Does anyone have any advice or maybe some experience similar of their own?

Hi @chey1023, welcome to Connect. You'll notice that I moved your message to an existing discussion about dystonia. I did this so that you can meet other members like @AgentDarien and @matttheschmatt.
I encourage you to also read and post to this discussion:
- Myelination process and my daughter https://connect.mayoclinic.org/discussion/myelination-process-and-my-daughter/

I can only imagine how frightening this is as a parent of such a young child. Do you know about the Dystonia Medical Research Foundation? https://www.dystonia-foundation.org/ They may have good references for specialists in pediatric dystonia.

Still searching for help for my daughter with this also. She is not a candidate for botox. Is on Artane but does not seem to be helping. Waiting for a reply to a referral we got.

We have tried about 8 medications with none helping and only Clonezepam helping a little with anxiety and some muscle tension. We recently attended a forum led by the Dystonia Research Foundation at Northwestern Hospital in Chicago. Dr. Cynthia Comella of Rush Medical Center showed a presentation which listed many drugs and their efficacy for dystonia patients. Sadly most didn't work well. Please contact the foundation to get a copy. It is eye opening.

Hello @matttheschmatt

Thanks for providing information about the forum you attended. I am sorry to hear that you did not receive better news regarding effective medications to treat Dystonia. In case any of our other Members are interested in programs that will be presented about Dystonia, here is a website listing events in different areas across the country, https://www.dystonia-foundation.org/site/event/what-is-dystonia.

Matt, how are you doing with your dystonia symptoms currently?

I look forward to hearing from you again.

Teresa

Hello. I have the type of dystonia called cervical dystonia, which involves the neck but in many of us also affects the jaw and facial and head muscles. I tried beta-blockers and muscle relaxers and while they gave me some relief, the side effects were so bad in me that I had to come off them. I really don't want to do the botox. I'm looking into LDN, because I've heard it can help some with dystonia a lot and I also have fibromyalgia and it has great results with that too. Problem is, LDN is off-label usage and it is hard to find a prescribing doctor. I'm still in the process. I do tai chi in that helps a lot with balance and mindfulness and relaxation. Lifestyle Changes focusing on low stress and meditation and muscle relaxation are kind of the only things that help so far for me.

Have had another round of botox and its helping. What is LDN?