Myoclonus
 

Hello strangers I am glad something is back I have missed this. My wife for you that don't know suffers from Myoclonus that was caused 6 years ago by an epidural during child birth. I am found a study up in Maryland to test the results of using injections to control that type of movement disorder. I received the email from someone about calling to see if she qualifies or not. It sounds like they have a big study area there for movement disorders. Just wondering what people think or whether anyone knows about it. Thanks.

Good to see you here!
 

Hi there, yes I recall your wife & what she has been through. Question-what kind of injection into the spine? How long has this procedure been done? Is this for research? Any cost to you? What does her doc think of this?

Has she had ANY improvement at all?

When I was first diagnosed with myoclonus by a neuro I was relieved to have an actual word for my condition. Prior to the brain & spine MRI's I was referred to a ortheopedic (sp) clinic,they took one look at me & said Parkinson's, then scheduled me for steroid shot in my spine! since I'm a diabetic I researched steroids & diabetes & decided not to go for the shot-lucky thing I did cause steroids would have made my REAL problem (Lyme disease) sooooo much worse!

I know you are desperate for relief, just want to throw out a big caution for trying something "new".

What really gets me is that we aren't told WHAT CAUSES the myoclonus. In your wife's case it was the epidural, are they thinking another shot in the spine will reverse the damage??

This is interesting & I wish the best for you-keep us updated please!

Take care,Buttons

Myoclonus
 

Buttons,
Thanks for your response, and good to hear from you. The shots are botox injections, and yes it looks like it is for a study. The doctor she used to see in Houston that was the quack we talked about before had even suggested that like more than 2 years ago. She currently has not been seeing a doctor for it due to the fact that none have done anything to help or seem to care. Regarding the cost I don't think there is supposed to be, but not sure until I get a chance to talk to them to see if she qualifies as they put it. I have talked with her about it, and she says she is up for it knowing the uncertanties. Take care.

Botox huh?
 

Well Craig I understand how desperate she is (and you!) for some actual RELIEF!

I'd do alot of research if I were you. Botox is very expensive isn't it?? I know they are finding alof of uses for it other than wrinkles!

Perhaps you could find a good discussion forum on Botox?? Where real people have had the injections?

Who is financing this? The manufacturers of Botox??

Has your wife had NO improvement at all? I'm sure I've espounded on the benefits of magnesium & B12,etc. Has she ever been given injections of either?

I'm sorry she is still suffering, as for myself-I rarely have any jerks anymore & it HAS to be cause of the vits/etc I take cause I've never used any meds for it. I might be an alcoholic now however, I drink wine every night-if not I will start the jerking!:rolleyes:

In my experience VERY few doctor's even know what the heck myoclonus is!

I have developed the jerks UNDER my lower eye lids, I assume this is yet another weird Lyme symptom,it comes & goes. (Of course it wasn't happening when I recently went to yet another eye doc!):rolleyes:

I've given up on doctors!

Take care,Buttons

P.S. The old BT is up & running....perhaps see you there?

Botox has been used for years in other movement disorders (e.g. dystonia) and in cerebral palsy - the wrinkles business came about after.

Buttons
 

I got your message. What I do know right now is what I found on the wemove website under the research thing it again is a Hospital in MD that apparently does alot of this. It would be them I guess, but we will know more when they contact us I figure. Yes botox is expensive the doctor (the quack from before) when he said that as a possibility he stated it would cost about 1200-1300 for one that would have to be taken every couple of months. 700-800 for the shot itself, and the rest to administer it. Since this is a research thing the shots should not cost just not sure about the transportation though. Thanks for your thoughts. Take care.

Hope this will provide some relief!
 

If Botox will help her-go for it would be my suggestion. I'd be sure to read the small print (disclaimer), medical profession caused this in the first place right?

Best of luck,you guys deserve it!

Buttons

I also have myoclonus- 2 types
 

Like your wife, I too have myoclonus. Once I turned 31 I got essential Palatal Myoclonus. When I turned 35 I also got Spinal Myoclonus. They have no idea how or why I have this. I am now 36 with no sign of either disappearing. It is an aweful and very lonely condition to have. Only 1 in 2 million have Palatal Myoclonus and only 1 in 3 million have Spinal Myoclonus so it makes this burden even heavier for me. No meds have worked, but caused Nuerontin me to gain 30 lbs. The only thing that has worked like a God- sent are 2 things: Biofeedback and PT. The Physical Thereapist does cranical sayprial (spelling is wrong- sounds like that) work to slow my central nervous system. The root cause of myoclonus is the involuntary over firing of the neurons in your brain. Have your wife ask her doctor about these two things. Best wishes. Topsie

causes of myoclonus
 

As I understand it, there are about 80 different drugs that can cause myoclonus....just for starters. I suspect that depending on where it is in the body it may have different aietiologies (causes and progressions).

Palatal myoclonus I am currently researching but have not had much luck contacting Topsie in this forum, who also seems to have it.

I understand that palatal myoclonus can be caused by some malfunction in the Guillain-Molleret triangle. The precipitating cause could be post infectious brainstem encephalitis. I have also read of a person having their palatal myoclonus cured after removal of adenoids...go figure!
Am still researching this.,

Walker its interesting you say your wife experienced this after epidural...since I recall my mother coming in to hospital to visit me after childbirth and noticing my entire body was shaking.. (BTW< my epidural only worked on half of my body and just prior to C-section incision and about to make the cut they checked if I could feel both sides, one side I couldnt ,the other I could ...then they must've topped it up. I swear I sensed an airbubble rising right up into my throat on the r side as they cut into me.

I think possibly injury, infection and medications all may play a role. Hope your wife finds some respite.
Topsie is correct that the cause involves overfiring of noeurons in the brain...but the reason could be because of some damage aeitrogenic/car accident/dental work & medications.

I had an accident last 06Sep03 in the Philippines which left me deaf and disabled, plus I suffer from what my first neurologist then termed it as Myoclonus from the brain trauma. My symptoms are:
I couldn't control my right hand
I couldn't control the tips of my fingers of my left hand (though I could control it)
I couldn't control my right toes
I'm sleep-deprived. => This is my primary concern now. I've read that it's symptom, not age, related. Most likely it has something to do with my accident. My current sleep now only averages 3 hours. I sleep at 8, then I wake up at 11. My target now is to normalize my sleep, for even if my eyes are really sore, I still couldn't fall asleep.
I feel if I'm prescribed the right muscle-disorder drug, I would regain control of my hands, and get adequate sleep.
Maybe a web can come up with a site where you can enumerate the symptoms, and the site can provide possible diagnoses, you print them out, and present it to your doctor.

Your situation is truly burdensome. I was wondering though, if your case of Palatal Myoclonus occurs only in 1 in 2 million and Spinal Myoclonus only occurs in 1 in 3 million, then how did you get the diagnosis right in the first place?
Because I made suggestions in various health forums where a patient can key in the symptoms, the internet will come up with the possible diagnoses, print them out and present it to your doctor who will then give the final diagnosis.
I would like to make use of the power of the internet to limit the diagnoses, reduce the trial and error stage, and reduce the frustration of both doctor and patient.
Right now, I feel I'm not getting the right diagnosis as my symptoms don't match the descriptions of myoclonus, specifically Lance-Adam's Syndrome. The only drug to reduce my hand tremors was Piracetam, but my body has developed immunity from it.
Though the urgent problem I want resolved is my inadequate sleep. I feel though that if I'm prescribed the right muscle-disorder drug, its side effect will affect my sleep.

in response to Pain's message
 

Hi Pain
Yes, I have both forms of myoclonus and have received 5 different doctor verifications that I do indeed have these two rare forms of myoclonus. Best of luck to you. :) Topsie

botox for myoclonus
 

HI I had botox shots in the palate of my mouth for my palatal myoclonus. They are very painful and dangerous because that is right near your swallowing muscle etc. One time out of four was helpful. The other times resulting in massive ear popping- aggrevated my myoclonus. If you can find an accupuncturist who is very well studied in the authentic Chinese ways of accupunture- perferably someone directly from China who has studied many years there- then accupuncture has been helpful to me for both my palatal myoclonus and my spinal myoclonus. I went to one accupuncturist who did not really know the body connections and after those accupuncture sessions the ear popping was absolutely horrible- 72 pops per minute in each ear for 2 straight weeks. However, I have just started going 2 times a week to an amazing accupuncturist who taught and studied accupuncture for 37 years in China and he has been very, very helpful. So study who you go to and try accupuncture NOT botox. :) Good luck. :) Topsie

hope this goes through
 

HI Burnmyo
Thanks for your efforts. Sorry for the late reply, but for some reason when I try posting my posts don't send. Hope you get this one. :) I have had palatal myoclonus for almost 6 years and spinal myoclonus for 2 years. I have tried every type of medicine, botox etc you name it. My two suggestions for getting some type of relief are- biofeedback and accupuncture. But be VERY careful who you go to for accupuncture and be sure that he or she is VERY well trained in the authentic Chinese ways of accupuncture. Another thing- this is strange, but eating ginger - straight ginger- has been a little helpful and taking Slow Mag has also helped a little. Some times NOTHING helps and sometimes you get a tiny bit of relief. This condition has a total mind of its of own. I know what you are going through. I have been told there is "no cure" and "no cause", but I will NOT give up trying to help myself and others out there. :) Never give up! Best of luck. Please keep in touch. :) Topsie

try Valuim and Toporol to sleep-ASK YOUR DOCTOR
 

I totally understand the lack of sleep. My ear popping - over the last 6 years and now my shoulder spasms over the last 2 years make sleeping difficult. I take a small bit of Valium and Toporol every night to sleep. ASK YOUR DOCTOR if these meds are right for you. This helps and my spasms are worse the next day if I don't take them. Neurontin is a horrible medicine! I was put on this for 4 years and it did NOT help! Best of luck. Topsie

I too have given up on doctors- but NOT given up :)
 

I have tried botox shots in my palate. It is very painful and was not helpful. I suggest accupuncture and biofeedback NOT botox. Never give up because as we all know the doctors WILL give up on your case. I had one doctor prescribe me 7 months worth of Neurontin and told me "don't make another apt- don't come back - there is nothing I can do- you have no cure just take this medicine." I foolishly did - for 7 months- I took Neurontin with NO doctors care. I have been told countless times there is "no cure" and "no cause" and "no one else has this so there is nothing really on these conditions" etc. The prob is they do not research- if they did they would see this site and realize OTHER people DO have this condition! I have both spinal myoclonus and palatal myoclonus. Though I have never met anyone with spinal myoclonus. These have been devasting conditions, but I have not allowed them to devaste me - though at the beginning I totally did, but this has been going on for 6 years (p.m.) and 2 years (s.m.). The spinal myoclonus has been truly challenging because the outward spasms have been very obvious to other people. No one can tell my ears pops MANY times (5 to 61 pops) per minute. :) I hope you all will also remain strong. You MUST be your strongest advocate everyday and don't rely on the doctors or anyone else- rely on yourself and share with others. :) Best of luck. Keep in touch and keep me posted. :) Topsie

You sure are tough and an inspiration to us all to keep hoping.

Well, I know what worked for me. I discovered that it's the side effect of a muscular disorder drug.
That ear-popping must be agonizing. Glad to know you found some relief.

Myoclonus- a life taker
 

I have had myoclonus since about 8 years old am now 26. I have arm and neck jerks that are very painful and annoying but mostly embarrassing. Cant even hold a cup of water. Am always tense and stiff and very anti social. I feel like I'm trapped inside myself because i want to be normal but cant. I am extremely intelligent but is useless since I can't handle much without hurting myself or things. Is there anyone else like this if so please contact me asap i dont know anyone like me.

ecjay
 

I am amazed to read this - I have myclonus and my neurologist tells me he doesn't know how it started - but I know - I had a fall that injured two disks and after that came the myclonus - I am sure of it. I take mirapex - sometimes it is gone for weeks thancomes back full force - the "jerks" are so powerful I almost fall out of bed. I am anxious to learn more about botox - I will do anything to relieve myself of this - it is ruining my life. I have no one to talk to who understands inclujding doctors.

Recognition
 

Hi, I have have heavy mussle spasms in my upper body, and tremors for about 5,5 years now. In Dutch they called the spasms Myoclonieen, so that probably the same as Myoclonus. (I don't have a medical dictionary here).

The diagnoses I have got is; Conversion disorder or functional neurological movement disorder. Or -We don't know-

But the strange thing is that Parkinson medication (dopamine), helps a great deal for me. I'm a riddle for the medical world, because all my symtoms don't add up and the medication isn't suppose to work.

The last neurologist advised to Botox injections in my backmuscles. I didn't got much information about it. In the Netherlands it's only used on this scale in a medical trial. So i'm curius to read more here.

But for now I first want to see how far I can get with the Parkinson medication.

Keep posting!

Sophie

Search on here for Aunt Bean... and read about her fava beans... they have worked wonders for me

Thanks, I will look into it. Fava beans (broad bean or in Dutch; tuinbonen) are very common here, so I'm very curius about it. But I have to look how much and how to take them, to have them helping me.

bye Sophie

I have been dxed with multi focal myoclonus 6yrs or so
 

I an tonijo and could use some advice my myoclonus is multifocal and through the yrs gotten diff symptoms like the newest one is spasams in my back feels like its pulling on my spine and the pain oh my god is unbarable the doc just treat me with norco for pain I just take soma for muscle relaxer it was best for me to function, nero wants me to take zanaflex but I cant function 2x a day all I do is sleep.I want to treatthe cuase but dont know if this is posible .I have soft palit tremore s at rest and intental I fall all the time no balance I drop things bad pain in legs and now BACK Ican,feal balls of muscle and they hurt so bad I dont know where to go from here and now to top it all off my doc of 11 yrs retires and new doc dosent want to handle my pain so I am going to pain management she gave metill I see pain management for norco dose .tremors always present but back has me scared any help would be great thank you sorry if I posted this wroung

help muscle spasams in back
 

topsie if you have any advice for me I would be glad to hear it I have lumps in my bask spasams and they pull on spine and goes all the way to feet alot of pain thanks tonijo

ditto
 

I have been told that if the carba/dopa helps it is probly parkingson or parkinsizim maybe check into it I also take carba /dopa (siniment ) and it helps my tremors so maybe something to check out tonijo

back muscles
 

doc hasnt tried to help my back spasams I wounder if I should ask about the botox it hard for me as no insurance to do too much at a time do you think it would help the balls of muscles in my back thanks tonijo?

Hi there, i have just joined this group because i would like to know more about Myoclonus, i have severe tremors in my lower back, but only at night, this can happen between 1 and 6 times a night and last from 10 seconds to 2minutes, it never happens during the day (which is good) I have been to the Doctors and have been sent for Physiotherapy and now a course of Acupuncture, but have not been diagnosed with anything, can you help please.

Acupuncture for myoclonus
 

Hi--I just wanted to comment, if I might, at acupuncture treatments for myoclonus. While most acupuncturists or those that adhere to Traditional Chinese Medicine will tell you that multiple sessions are needed to "cure" or "treat" an illness, for me there wouldn't be enough to ever convince me of going back. As soon as I spasmed, I could feel all of the needles that were in my legs. I couldn't wait for them to be removed--it was like torture. While there is no cure--and trust me when I say that I've (most of us) tried most everything--IMO, I would rely on PT more than acupuncture (though I've heard that acupuncture is excellent for those who suffer from migraines or any sort of pain disorder). Or if you are looking for a less invasive form of TCM, but one that increases blood circulation and oxygen flow like acupuncture, I would go to someone who is familiar with acupressure which is very similar but is non-invasive and does not break the skin barrier. I hope this helped.:)

new to spinal myoclunus
 

After suffering a bad fall in April 2011 I kept complaining of a pinching feeling and loss of leg function. Although S1J's were identified as part of the issue, no one could tell me what it was. I was in alot of pain and nothing was helping with the inflammation.
On October 28 I had cortisone injections to both sides of my tail bone. It felt like they had hit a nerve but this was not the case. Within one week I was having violent jerking movements to my right side, mainly arm, torso and neck. The main base of the pain coming from the buttock area. Again, no one could make any sense of it and I was made to feel by one specialist that I was making it up.
I was put on large doses of morphine to combat the pain. It took 3 months to get in with a Neuro. It took him 5 minutes to identify spinal myoclonus as a direct result of the trauma from the fall. The cortisone was the catalyst, sending the nerves into complete hyperdrive.
He advised that all the codiene based meds I was taking were making the symptoms worse.
For two weeks now I have been morphine free and am on Clonozapam to control the tremors. The medication makes me very dopey and so far the jerking has been worse than ever lasting up to an hour. I am tired.
The neuro assures me that this will go away in time but cannot tell me how long. I am worried about being on these meds long term and am reading alot of stories of people who never really recover.
I feel really alone in this and it is made harder by peoples stares. My kids say I look like one of the Thunderbirds puppets!

Oculo palatal myoclonus
 

Hello there,

My husband suffered Brainstem cell stroke located in the lower part of Cerebellum two years ago , he is 50 years old.
he was recovering, 3 months post his stroke while coming back from physio in hospital in his wheelchair, his mind /head "spun" for a fraction of a second and ever since then his health has been deterring.
He suffers from OCULO PALATAL MYOCLONUS, his eyes are closed all the time,he has double vision, central vertigo symtoms, tinnuts, internal body shacking, tremors, his body feels extremly heavy, no center of gravitation, double vision.
He is full of life and still exercises never mind the fact that each movement he makes his body sends very strong jolts/shocks .

I am looking for Chinese veteran of clinical and teachings of acupuncture.

Nothing is working in our favour.


Someone please if you know , please help us.

Thank you.

Hello Buttons,
My 18 years old niece has Myoclonus an we have an appointment for the botox injections in September. Did they help your wife at all? If its for a study could you please give me the details and I will make contact with the hospital. As you will no this is a very difficult situation and I sympathise with all of you. I can just imagine what you are going through.
I would love for you to respond.
Thanks Clare x

hi i hope we can talk
 

hi,i has a epidural in october and started having the jerks soon after.
please contact me if you see this thanks,john