1. < Brain & Nervous System

Spasticity?

Posted by aarniek @aarniek, Apr 7, 2018

I have been living in my recliner for over 5 years as this muscle spasticity keeps me from walking more than a few feet! It's due to stopping a Benzo with a 5 week taper and 3 neurologists have done nothing for me! Anyone find something to help?( I even had Botox and it did nothing)

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aarniek | @aarniek | Jun 10, 2018
In reply to @colleenyoung "@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar..." + (show)
@colleenyoung

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

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I tried both and neither helped,but I appreciate you telling me ! I am in year# 6 of this insane muscle tightness and getting worse each year! The only thing I have not tried is an oxygen chamber ,even had Botox injections and nothing ! Trying to do the chamber,but my doctor has not approved me for it yet!

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aarniek | @aarniek | Jun 10, 2018
In reply to @colleenyoung "@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar..." + (show)
@colleenyoung

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

Jump to this post

Just saw this- can't take ANY medicine - ALL made me worse ( dantrolene,Zanaflex,Flexiril ,what ever ) ,,but thank you for your post!

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oakbourne | @oakbourne | Jun 18, 2018

Please visit a Movement Disorder Neurologist - ONLY! That's their expertise...Movement Disorders that cause spasms,pain, pulling and Hell on Earth dealing with Movement Disorders. It's familal and runs in families. You only have to inherit the disease from one parent. They may or may not show symptoms but can pass it on to their children and grandchildren. It's on the DYT1 gene. Botox quit working for me and I now take Myoblock and Klonopin. I've had the Selective Denervation Operation and it helped. You may want to try that. Most of my 10 aunts and uncles suffered from Movement Disorders and my cousins, too. I have Spasmodic Torticollis and oral mandibular tightness. Smiling is a nightmare.This is a monster disease. Plus get a drug list of medications and over the counter supplements NOT TO TAKE!

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4 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 18, 2018
In reply to @oakbourne "Please visit a Movement Disorder Neurologist - ONLY! That's their expertise...Movement Disorders that cause spasms,pain, pulling..." + (show)
@oakbourne

Please visit a Movement Disorder Neurologist - ONLY! That's their expertise...Movement Disorders that cause spasms,pain, pulling and Hell on Earth dealing with Movement Disorders. It's familal and runs in families. You only have to inherit the disease from one parent. They may or may not show symptoms but can pass it on to their children and grandchildren. It's on the DYT1 gene. Botox quit working for me and I now take Myoblock and Klonopin. I've had the Selective Denervation Operation and it helped. You may want to try that. Most of my 10 aunts and uncles suffered from Movement Disorders and my cousins, too. I have Spasmodic Torticollis and oral mandibular tightness. Smiling is a nightmare.This is a monster disease. Plus get a drug list of medications and over the counter supplements NOT TO TAKE!

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@oakbourne

I appreciate your posting about your disorder and I am sorry to hear of the many problems you have experienced. You certainly provided some helpful information. In reading a bit about the Selective Denervation Operation I see that it is often followed up by physiotherapy? Did you have that as well?

I look forward to hearing from you again.

Teresa

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12271997 | @12271997 | Jun 18, 2018
In reply to @oakbourne "Please visit a Movement Disorder Neurologist - ONLY! That's their expertise...Movement Disorders that cause spasms,pain, pulling..." + (show)
@oakbourne

Please visit a Movement Disorder Neurologist - ONLY! That's their expertise...Movement Disorders that cause spasms,pain, pulling and Hell on Earth dealing with Movement Disorders. It's familal and runs in families. You only have to inherit the disease from one parent. They may or may not show symptoms but can pass it on to their children and grandchildren. It's on the DYT1 gene. Botox quit working for me and I now take Myoblock and Klonopin. I've had the Selective Denervation Operation and it helped. You may want to try that. Most of my 10 aunts and uncles suffered from Movement Disorders and my cousins, too. I have Spasmodic Torticollis and oral mandibular tightness. Smiling is a nightmare.This is a monster disease. Plus get a drug list of medications and over the counter supplements NOT TO TAKE!

Jump to this post

My neurologist knows causes are hereditary my grandfather and dad have it. Meds I take do .and he says he'll change the doses if I want to I'm not making any changes to my meds b/c seizures are being controlled. I also take klonopin and do the exercises for hands and fingers

REPLY
oakbourne | @oakbourne | Jun 19, 2018
In reply to @oakbourne "Please visit a Movement Disorder Neurologist - ONLY! That's their expertise...Movement Disorders that cause spasms,pain, pulling..." + (show)
@oakbourne

Please visit a Movement Disorder Neurologist - ONLY! That's their expertise...Movement Disorders that cause spasms,pain, pulling and Hell on Earth dealing with Movement Disorders. It's familal and runs in families. You only have to inherit the disease from one parent. They may or may not show symptoms but can pass it on to their children and grandchildren. It's on the DYT1 gene. Botox quit working for me and I now take Myoblock and Klonopin. I've had the Selective Denervation Operation and it helped. You may want to try that. Most of my 10 aunts and uncles suffered from Movement Disorders and my cousins, too. I have Spasmodic Torticollis and oral mandibular tightness. Smiling is a nightmare.This is a monster disease. Plus get a drug list of medications and over the counter supplements NOT TO TAKE!

Jump to this post

No, never had physiotherapy. They cut the overactive nerves (7) and it'd helped a lot. Of course the nerves regenerate, but I'm so much better after the surgery and it's been 18 years. The best doctor is Dr. Arce of Shands Hospital, in Jacksonville, FL. Not everyone is a candidate, but you may want to give him a call. I only trust my life with Dr. Arce, a great neurosurgeon.

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oakbourne | @oakbourne | Jun 19, 2018
In reply to @oakbourne "Please visit a Movement Disorder Neurologist - ONLY! That's their expertise...Movement Disorders that cause spasms,pain, pulling..." + (show)
@oakbourne

Please visit a Movement Disorder Neurologist - ONLY! That's their expertise...Movement Disorders that cause spasms,pain, pulling and Hell on Earth dealing with Movement Disorders. It's familal and runs in families. You only have to inherit the disease from one parent. They may or may not show symptoms but can pass it on to their children and grandchildren. It's on the DYT1 gene. Botox quit working for me and I now take Myoblock and Klonopin. I've had the Selective Denervation Operation and it helped. You may want to try that. Most of my 10 aunts and uncles suffered from Movement Disorders and my cousins, too. I have Spasmodic Torticollis and oral mandibular tightness. Smiling is a nightmare.This is a monster disease. Plus get a drug list of medications and over the counter supplements NOT TO TAKE!

Jump to this post

Did you say you have Essential Tremor? My mother's family of ten children all had shakiness in their hands. Also tremors of the oral mandibular area. Plus hyperactivity. Plus my cousins have it too. It only takes one parent to get this Dystonia, and you may not have any symptoms but you're carrying the defective gene and your children can inherit this and on and on.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 19, 2018
In reply to @colleenyoung "@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar..." + (show)
@colleenyoung

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

Jump to this post

@12271997 I invite you join this discussion about aphasia.

- Let's "Talk" About Aphasia https://connect.mayoclinic.org/discussion/june-is-national-aphasia-month/

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 19, 2018
In reply to @colleenyoung "@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar..." + (show)
@colleenyoung

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

Jump to this post

@12271997

A speech therapist is one of the most helpful people to deal with aphasia and other speech matters. I would encourage you to make an appointment and enjoy the experience of having some support with your speech issues. I have had numerous sessions of speech therapy and always come away speaking better and having benefited from the experience.

I look forward to hearing from you.

Teresa

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 20, 2018
In reply to @colleenyoung "@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar..." + (show)
@colleenyoung

@aarniek thanks for starting this discussion specifically about spasticity. I'd like to invite @hopeful33250 @hump1278 @maryar and @magg to also join the discussion.
Have you tried physio? Is splinting, bracing or casting an option for you?

Jump to this post

To @12271997 and others who deal with Aphasia (or put more simply trouble with words and speech).

June is National Aphasia month and I would like you to know about a program that will be available on Friday, June 22, online. This program will introduce you to a therapy called, "Work Out Your Words." This program synchronizes language and cognitive tasks with movement. Sounds like a great idea to me for movement and speech problems which I have that occur very unpredictably. I am looking forward to watching this, please join me! Here is the link, http://workoutyourwords.com/pdf/Work%20Out%20Your%20Words%20flyer%20June.pdf

Teresa

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