Anyone else have cervical dystonia?

@vicky9, @crepass. and all...My son is on 100% disability for 20 years, developed cervical dystonia at age 35. He has lost the important years of his life, suffered immensely, and lives an isolated, painful, lonely life. I help him as I can.

It took me so long and hard searching to find someone qualified to diagnose his problems. He is now, finally, seeing an internationally known leader in the Movement Disorder field of Neurology at Mayo Clinic Florida. It's a gift from above!

This wonderful doctor is caring, understands this and all movement disorders He truly understands my son's issues, he knows exactly where to give the shots, how much Botox to deliver with each, My son tells me this doctor is the best of several who've given him botox shots. He thinks it's miraculous. The help he gets from these treatments is helping him so much. He was on all the opioid meds for many years. With no diagnosis, the docs often thought he was a druggie. He's not. He's in severe pain and couldn't get help for years. I've fought long and hard to get him to this point

He also now, for 2 years, has a morphine pump, with dilaudid. It has taken most of the pain and gotten it under some degree of control, except the shoulder/neck/arm pain that Botox helps.

His third leg of help is medical marijuana. He uses MM daily, vapes, and also the CBD/THC lotion. I use it to help relieve pain in my hands, feets, legs, and back. Arthritis pain, fibro, and sarcoid pain. It is amazing. I also used it on a horrible rash/blistering on my body and it instantly stopped the pain and led to healing. It's amazing stuff.

Find a Movement Disorder specialist, neurology. This is the only doctor who can properly diagnose and treat cervical dystonia. He got the pump from his pain clinic and can now add a boost 4-5 times daily if needed. which probably save his sanity, as he can control the Dilaudid based on the pain using a battery-operated device to click and add med.

It's a combinaltion of treatments developed for the patient's specific needs. I recommend a major clinic or research center, like Mayo Clinic. This doctor treats patients from all over the world. He has conducted years of research and is well known for his findings in movement. He treats me for Parkinson's symptoms, well.

I hope this information has helped and will help you find peace. This is a horrid disorder and very difficult to diagnose and treat effectively. After many years of pain and mistreatment, he is finally finding some relief, from his Mayo doctor.

Blessings and may your find help and peace.
elizabeth

I tried the Botox shots for my cervical dystonia and they did seem to help. I'm not able to take any of the pain medications so I can't address those problems. My problem is in finding a neurologist who is interested in helping. Most of them just have an attitude of "there's nothing we can do". Please let me know if you decide to do the Botox and how it works for you. Good luck.

Thanks Elizabeth, so much helpful information. I am glad your son have found help through Mayo doctors, I am new on this journey and have no pain so far. My tremors are still somewhat controllable except in stressful situations. I will get first Botox txs in January. It is good to know that there is a close Mayo doctor in Florida if I need help.

@vicky9, @crepass. and all...My son is on 100% disability for 20 years, developed cervical dystonia at age 35. He has lost the important years of his life, suffered immensely, and lives an isolated, painful, lonely life. I help him as I can.

It took me so long and hard searching to find someone qualified to diagnose his problems. He is now, finally, seeing an internationally known leader in the Movement Disorder field of Neurology at Mayo Clinic Florida. It's a gift from above!

This wonderful doctor is caring, understands this and all movement disorders He truly understands my son's issues, he knows exactly where to give the shots, how much Botox to deliver with each, My son tells me this doctor is the best of several who've given him botox shots. He thinks it's miraculous. The help he gets from these treatments is helping him so much. He was on all the opioid meds for many years. With no diagnosis, the docs often thought he was a druggie. He's not. He's in severe pain and couldn't get help for years. I've fought long and hard to get him to this point

He also now, for 2 years, has a morphine pump, with dilaudid. It has taken most of the pain and gotten it under some degree of control, except the shoulder/neck/arm pain that Botox helps.

His third leg of help is medical marijuana. He uses MM daily, vapes, and also the CBD/THC lotion. I use it to help relieve pain in my hands, feets, legs, and back. Arthritis pain, fibro, and sarcoid pain. It is amazing. I also used it on a horrible rash/blistering on my body and it instantly stopped the pain and led to healing. It's amazing stuff.

Find a Movement Disorder specialist, neurology. This is the only doctor who can properly diagnose and treat cervical dystonia. He got the pump from his pain clinic and can now add a boost 4-5 times daily if needed. which probably save his sanity, as he can control the Dilaudid based on the pain using a battery-operated device to click and add med.

It's a combinaltion of treatments developed for the patient's specific needs. I recommend a major clinic or research center, like Mayo Clinic. This doctor treats patients from all over the world. He has conducted years of research and is well known for his findings in movement. He treats me for Parkinson's symptoms, well.

I hope this information has helped and will help you find peace. This is a horrid disorder and very difficult to diagnose and treat effectively. After many years of pain and mistreatment, he is finally finding some relief, from his Mayo doctor.

Blessings and may your find help and peace.
elizabeth

This is great to hear. I myself suffer from cervical dystonia. I’m in with a movement specialist. Rescently my injection dr has left so I will need to find a new one. I see the pain clinic dr once a month and I’m in Vicodin and also rescently use medical marijuana for pain. The pain in my arms is getting unbearable. I’ve been not working the last 2 years however was diagnosed 5 years ago. I’m not sure how much more I can take. I’ve also been suffering with headaches and tremors

I HAVE CERVICAL DYSTONIA. THE PAIN IS UNBEARABLE. IS THERE ANYONE OUT THERE WITH THE SAME SITUATION.

I need help with my condition: Spasmodic Torticollis.

Does anyone have or know of someone who has cervical dystonia? I have had this since 2012, and I am always looking for anything that helps with the pain and spasming muscles.

I HAVE CERVICAL DYSTONIA. THE PAIN IS UNBEARABLE. IS THERE ANYONE OUT THERE WITH THE SAME SITUATION.