Botulinum toxin (BoNT) Patient Views

Yes, I have been using Botox for about a year. Injections are somewhat painful but in the end it does seem to be worth the initial discomfort.

Botox is injected into both of my calf muscles and does help my gait.

If you decide to pursue Botox, temper your expectations to start with because it can take a year or longer to really dial in on the best injection sites and dosages. They generally try to be conservative for obvious reasons.

I get injections for cervical dystonia and also have a shoulder that won't relax, so the MDS does a few injections around there, too (but says the options are more limited). It's been helpful in making me more comfortable but the cyclical nature of the effects wearing off is a little tedious at times. Hopefully it's beneficial to you, OP.

I’m in a Botox clinical trial at NIH. I have right limb dystonia. It has been life changing for me. 3 years ago I couldn’t control my hand enough to chop vegetables or manage eating utensils with a constant ulnar nerve pain 7/10. My pain is now 2/7, my uncontrollable hand contractions are minimal and I can perform menial non repetitive tasks with comfort again. I can’t say my functionality 100% but I am able to go to restaurants again and I’m not sitting in my chair weeping from the constant nerve pain anymore.

Hello again friends. I have recently joined you all. I have a question about Botox. I have been on a journey since last July trying to figure out where my arm pain has come from. I was told I had essential tremors. It looks as though I'm well on my way getting diagnosed for PD (dat scan a week from tomorrow).

I started my journey with orthopedic doctors and got a lot of wrong diagnosis about my arm, went to occupational therapy and it did not help at all. I've been off work since May 9th as it was thought perhaps it was ergonomics stressing it but I have not been typing or mousing and it's no better.

I am under the care of a physiatrist. She works in a neurologist office, and I also have a neurologist. My physiatrist has suggested that perhaps we should try some Botox injections in my forearm to see if that will help alleviate some of the pain.

I wonder if any of you have used Botox, and if you would not mind sharing your story. Thanks so much everyone ❤️

Botox injections helped me for about 5 years! Movement disorders physician really helped me out. Good luck! Peace

Thank you for sharing - I have had Botox but without success. No other treatment currently.

Thank you. We deeply appreciate your expertise and the time you took to help us through this serious condition. We have read about the potential benefits of Botox injections in alleviating certain types of chronic pain, and we are interested in understanding if this could be a suitable option for our situation. Specifically, we are hoping to learn more about it and want to discuss with our doctor also. My parent is experiencing severe, unmanageable pain day and night. Regular exercise seems to reduce severe stiffness and helping with movement but it's triggering lots of pain, without exercise, she becomes very stiff, very rigidity which again increases her pain significantly. In both scenarios, her pain remains a major issue that we are unable to control and handle. So we are asking for advice or sharing experience with Botox therapy. The effectiveness of Botox injections for our type of pain (neurological issues stiffness , rigidity). The procedure involved and any associated risks. How we might proceed with this treatment option if deemed appropriate.

I tried botox but I kept twisting my ankle because it paralyzes the muscles. Also had it injected in my neck. Never again, I couldn't hold my head up. It went too far up to the muscles that hold your head. Very painful. He had to give me an antidote (?) Sorry if I'm getting the words wrong, I know all this stuff in French!

The patient has Botox for their right foot. Their movement specialist started with low dosage and they are still increasing to find the right point where it releases their toes without too much relaxation. It does wear off after about six weeks. They go back in two weeks and they’re looking forward to that.

I’ve had dystonia in my left foot since 2018. To help or reduce my dystonia, I get Botox shots in my foot and shin area every 3-months.