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Showing posts with label spasticity. Show all posts
Showing posts with label spasticity. Show all posts

Sunday, February 23, 2020

Botox, OnabotulinumtoxinA




I would never think a procedure would be in your mind, as one to look forward to.

But Botox, or  OnabotulinumtoxinA t is used o treat dystethia, or muscle stiffness, muscle cramps, spascisity, walking problems, movement problems.  
A treatment which people with Multiple Sclerosis get.

Botox can be used to treat many symptoms associated with multiple sclerosis. Patients who have spasticity affecting their arms or legs may be good candidates for botulinum toxin injections to relieve painful spasms and improve mobility.

I have had botox treatments since being diagnosed  of multiple sclerosis. I had maxed out  baclofen  early on. My Neurologist, was a old timer, with no computers. He worked as a stand alone neurologist, with a staff of two office gals, one who did your appointmens, in her hand written book.  She had your paper file for Dr to go thru, ready for him.. The other gal had a real old computer, she could obtain the necessary forms on, and Bill the insurance. I am sure another gal took down info for billing outside of his clinic.

He used the old time scrypt, decypherable by him and a few Drs I talked with. Looked like scribble marks, but so does shorthand.  Dots of injection sites, other records were transcribed, like the sleep study.  EMG, was always followed up on how fast nerves responded. Record keeping in each patients file, as Dr would do before electronics came out.

A fax machine was used to fax prescriptions, but the new pharmaceutical companies did not like.  The neurologist would fill my Gabbapentin and Provigil.  I found a way around this by sending in original prescriptions for mail order to them, as faxes kept getting lost, or the insurance company would say, we've tried to contact your Dr multiple times, with no response. This happened by the insurance computer calling at 2am, not saying what was needed from the dr. It became a a problem for his staff, their limited time, and hours listening to messages, and hours I spent trying to find where the problem was. It was the insurance companies computer not recognizing the Drs Faxes.
There were a couple other part time gals, who ran the emg machine, sleep study, and other test.I

Botox works by blocking the release of acetylcholine from nerve endings. Acetylcholine is a neurotransmitter required by muscles for muscular contraction. By eliminating the ability of a muscle to contract, it relaxes, thereby decreasing spasticity and tone.

Spasticity is a condition in which muscles exhibit almost constant contracture or activity, leading to loss of range of motion, decreased function, and even pain.

Spasticity occurs after an area of the brain or spinal cord has been injured, leading to weakness and increased tone.

When an arm or leg which is affected by spasticity is moved by an examiner, there is involuntary resistance to that movement.

Often, this spasticity is made worse when the speed (or velocity) of the movement increases.

Spasticity is often seen after a stroke, traumatic brain or spinal cord injury, or in cases of multiple sclerosis.

In some cases, spasticity can be associated with development of involuntary tremors.

The blockade of acetylcholine does not occur immediately. Most patients do not begin to see the effect of a botulinum toxin injection for a few days, and it may take a few weeks for the maximum benefit to become apparent.
This neurologists was quite informed on latest developments, what was working, and what did not.  He could do a spinal tap right in his operating room, and send labs out, have results quickly.

This he did with my botox injections every three months, as that's all the insurance would pay for is every three months. My botox lasted 62-64 days, I would record in my book I brought in.  Botox day was describing muscles inside the leg, or outside ones. This would include stiff muscles in the neck, Charlie horses.
Or how the toes were curling in our out.
He knew where to inject the botox, the debth, and feel the muscle spasms.
Three weeks later was the follow up, where he would ask me what was in my book note book of questions, comments, and research. I had done.  A question answer period, sometimes a booster shot for botox, but lots of questions answered, and items to try to help.
Botox has a Black Box  warning.
From their site"
https://m.youtube.com/watch?v=4x9yRjrN0iQ

IMPORTANT SAFETY INFORMATION
BOTOX® may cause serious side effects that can be life threatening. Get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX®:
Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are pre-existing before injection. Swallowing problems may last for several months
Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms including: loss of strength and all-over muscle weakness, double vision, blurred vision and drooping eyelids, hoarseness or change or loss of voice, trouble saying words clearly, loss of bladder control, trouble breathing, and trouble swallowing
The black box warning continues an can be read at botox.com
BOTOX® may cause loss of strength or general muscle weakness, vision problems, or dizziness within hours to weeks of taking BOTOX®
The dose of BOTOX® is not the same as, or comparable to, another botulinum toxin product. .
Other side effects of BOTOX® include: dry mouth, discomfort or pain at the injection site, tiredness, headache, neck pain, eye problems: double vision, blurred vision, decreased eyesight, drooping eyelids, swelling of your eyelids, dry eyes; and drooping eyebrows.
For more information refer to the Medication Guide or talk with your doctor.
My Neurologist went on a "medical leave" just before botox was to be injected. This left me with the last injection being August 2019. My calves were tight, hard as rock before I was able to see a new Botox Neurologist. His First opening being late February 2020

The University Hospital used a EMG guidance computer to assist the neurologists and his student. A special chair to sit it that allowed easy access to multitudes of muscle names the Neurologist rolled off as he injected The multitude of sites.  The machine had sound, I could not see the graph. I just knew he was injecting the proper muscles and depth, from having them from old neurologist.   Both calls were hard as rock, some pulling on toes, or the top and bottom of the foot. This causes a lift problem with the foot.

My neck muscles had spasmed extensively. These muscles control the arms, which had signs where muscles were pulling you could see the indent near the elbow. Muscle names rolled off the Drs mouth as injections went deep into the muscle. I recognized the trapeze muscle, controlled by the neck, but had no idea of the names, or how deep these other muscles were. These were all injected into the neck location, on both sides.  The Doctor was more complete with more botox used into all the problem areas.
I will see him back in three months, keeping track in my book, of side effects, 

helpful and hopeful for great results.


I hear it helps for migranes and more.

Have you had Botox? And your story?  Chime in!
Cheers
JoeY

Friday, October 5, 2018

Quinine Toxic or helpful?





What is JoeY talking about now, you will ask.--------------------------------------------

Quinine is still added to Tonic Water. This is what you can use to make Gin and Tonic, or drink it alone. The USA banned quinine in all the other medicines that were available made with this, except Tonic Water, and limits how much they can use.

Quinine is made from the cinchona bark. As you might know, cinchona bark consists of quinine, which is toxic.
 
Quinine is a unique substance. It comes from the bark of the cinchona bark.
  It has a legal limit of 83 ppm in carbonated drinks, Tonic water, the only one.   Besides the use in Gin and Tonic, it was used medically for cramps before being banned in the USA.


"take one of the most popular tonic syrup recipes, published by Jeffrey Morgenthaler: 
Basically, it's 6 cups of liquid to 1/4 cup of powdered cinchona bark, which is about 35 grams of cinchona. Extrapolate from that and we're talking about 35 grams of cinchona per 1.4 liters of end syrup, which is 25 grams per liter, and if it extracts fully, contributes 1.25 grams of quinine per liter, which equates to 1251 parts per million. That's 15 times the CFR standard.
If you use 3/4 of an ounce of that syrup in a Gin and Tonic, you're adding in 27.5 mg of quinine - more than double the amount of quinine in a commercial gin and tonic. 
Note: Does a syrup extract quinine fully from the cinchona? No - but it extracts faster from powdered cinchona versus cinchona chips or quills.
Note: Does a syrup that is sieved through a french press or a coffee filter have a high percentage of solids still in suspension? Yes - and any of the solids you swallow contribute the full amount of the quinine as your body digests the powder. "

You must also hear The researchers notes read from test done by scientist. This may be enough to make sure to talk to Doctors before use. 


The Baclofen I am on was maxed out on the limit that I could use.  Diazepam in low dose was tried.

The spasms, Charlie horse and muscles in my calves not letting up.  Botox was being used every three months, Injected into certain spots of the muscles, by a Neurologist. This would last 60 days.
Research was done when Neurologist mentioned Quinine may help. A EKG was done of my heart.

A regular quart bottle was taken of  Tonic water which contained Quinine.  Nothing,  but it has A lot of sugar, and the sugarless has a sugar substitute, what I thought had been banned twenty years ago.

But not enough Quinine, and to much sugar.

My research led me to Quinine. The Dangers of Quinine, and how to make your own.
I found some suppliers, buying a pound of Quinine bark, and following a recipie by Jeffrey Morgan


https://www.jeffreymorgenthaler.com/how-to-make-your-own-tonic-water/

Their are different types of bark, and more research. This site has a lot of information.

This would amount to taking a shot glass, or a ounce of homemade quinine, which is about 27 mg quinine. 
Drinking this elixir would immediately stop my curling toes, and the bottom of the feet to the calves. I did not use any gin, and lowered The sugar content, as the Tonic quinine is what I wanted.

The recipe, and math was gone over with my Neurologist, and Heart Dr, so I would not build up to much quinine in my body. 

30 grams per ounce is what I try to obtain. Not more than a shot in a day, and only when really needed. 

Regular checks with the heart Dr, doing EKG, Echos,  GP, and Neurologist is a must! Listen to video.

  I could say this is a wonder bark from the tree, but you need to listen to the researchers notes to know why this was pulled from the market.  You need  your GP, Neurologist, Heart Dr, and all involved in your team to know before making it, or use of this substance. I am not promoting its use, or making this, just my research, and what worked for me might not work for someone else.

I am not saying, go make your own quinine.  But try a bottle of Tonic Water. It might be all you need.

Or better yet, a Tablespoon of yellow Mustard, has wonderful properties, scientist can not explain how Mustard will bypass digestion system, and calm muscle spasms. This was A mention from my Neurologist to try years later. Mustard. A plain yellow mustard works.

Thanks for reading
JoeY

Monday, August 6, 2018

Treatment

The treatment started with Copaxone injected daily in September 2012.

I had never needed pills or injections before. This is one of the Disease Modification therapies (DMT).  Copaxone,  (Glatiramer acetate) was chosen to try to slow my MS down.

Looking around the web, I found a young guy, named Matt Allen.  He has a blog I follow here :   http://mattsmultiplesclerosis.com

Matt also had a video, click here: Video of how to inject the Copaxone, as  Shared solutions, their company, did not have any video.  They were to send a nurse to my home to show me how to do this, but his video made me feel at ease, and led me to his blog.

Matt's  web site is quite detailed, and has explained his adventure with MS, and explains about MS.  His blog is always changing, and A great blog to follow since day one,

  Injections were easy for me, both manually and by their auto injector. The nurse was quite helpful, allowing me and my partner to learn injections, and sites, techniques, and practice, until ready.  I was skinny enough, that I did not need to change settings on the injector depth.   I am somewhere on the 2,880 th injection of copaxone daily as I write.  More on Copaxone in another blog.

But need to talk of Spasticity issues I was Having.


"Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech and gait. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement. "

This was already a part of me since 2010. I quickly reached the Maximum amount of Baclofen, which is used to treat Spasticity.

By November 2012, my next treatment was with Botox.
 "Botulinum Toxin A"  injections went into into both calf muscles, neck and forehead by  My Neurologist.  He could feel which muscles were problem ones.

This was due to issues of cramping muscles caused by misfiring electrodes from my brain, going haywire, being caused by Multiple Sclerosis.  This had been going on for two years now, with stiffness, and foot lagging.  When I walked, I had to tell my foot to move forward.

Botox is only covered for every 90 days. After day 62-64 they botox wore off.  My Neurologist was trying to slow the progression down.  More in another blog.

He followed up with  VER test of eyes, and lower extremities. I did not do well on either test, but he needed a starting point to see progression, which was better than MRI, as it checked the speed of nerves from brain to toes in both sides.

Thanks for reading
JoeY