Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).


advertisement
Reply
 
Thread Tools Display Modes
Old 09-10-2008, 01:24 AM #11
pian pian is offline
Junior Member
 
Join Date: Sep 2008
Posts: 19
15 yr Member
pian pian is offline
Junior Member
 
Join Date: Sep 2008
Posts: 19
15 yr Member
Default

Quote:
Originally Posted by Topsie View Post
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
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.
pian is offline   Reply With QuoteReply With Quote

advertisement
Old 02-19-2009, 11:29 PM #12
Topsie Topsie is offline
Junior Member
 
Join Date: Aug 2008
Posts: 13
15 yr Member
Topsie Topsie is offline
Junior Member
 
Join Date: Aug 2008
Posts: 13
15 yr Member
Default 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


Quote:
Originally Posted by pian View Post
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.
Topsie is offline   Reply With QuoteReply With Quote
Old 02-19-2009, 11:47 PM #13
Topsie Topsie is offline
Junior Member
 
Join Date: Aug 2008
Posts: 13
15 yr Member
Topsie Topsie is offline
Junior Member
 
Join Date: Aug 2008
Posts: 13
15 yr Member
Default 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



Quote:
Originally Posted by walker604 View Post
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.
Topsie is offline   Reply With QuoteReply With Quote
Old 02-19-2009, 11:56 PM #14
Topsie Topsie is offline
Junior Member
 
Join Date: Aug 2008
Posts: 13
15 yr Member
Topsie Topsie is offline
Junior Member
 
Join Date: Aug 2008
Posts: 13
15 yr Member
Default 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



Quote:
Originally Posted by burnmyo View Post
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.
Topsie is offline   Reply With QuoteReply With Quote
Old 02-20-2009, 12:00 AM #15
Topsie Topsie is offline
Junior Member
 
Join Date: Aug 2008
Posts: 13
15 yr Member
Topsie Topsie is offline
Junior Member
 
Join Date: Aug 2008
Posts: 13
15 yr Member
Default 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




Quote:
Originally Posted by pian View Post
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.
Topsie is offline   Reply With QuoteReply With Quote
Old 02-20-2009, 12:16 AM #16
Topsie Topsie is offline
Junior Member
 
Join Date: Aug 2008
Posts: 13
15 yr Member
Topsie Topsie is offline
Junior Member
 
Join Date: Aug 2008
Posts: 13
15 yr Member
Default 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




Quote:
Originally Posted by Buttons View Post
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!

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!)

I've given up on doctors!

Take care,Buttons

P.S. The old BT is up & running....perhaps see you there?
Topsie is offline   Reply With QuoteReply With Quote
Old 02-26-2009, 06:46 PM #17
pian pian is offline
Junior Member
 
Join Date: Sep 2008
Posts: 19
15 yr Member
pian pian is offline
Junior Member
 
Join Date: Sep 2008
Posts: 19
15 yr Member
Default

Quote:
Originally Posted by Topsie View Post
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
You sure are tough and an inspiration to us all to keep hoping.
pian is offline   Reply With QuoteReply With Quote
Old 02-26-2009, 06:47 PM #18
pian pian is offline
Junior Member
 
Join Date: Sep 2008
Posts: 19
15 yr Member
pian pian is offline
Junior Member
 
Join Date: Sep 2008
Posts: 19
15 yr Member
Default

Quote:
Originally Posted by Topsie View Post
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

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.
pian is offline   Reply With QuoteReply With Quote
Old 02-02-2011, 09:57 AM #19
mynemo mynemo is offline
New Member
 
Join Date: Feb 2011
Posts: 1
10 yr Member
mynemo mynemo is offline
New Member
 
Join Date: Feb 2011
Posts: 1
10 yr Member
Default 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.
mynemo is offline   Reply With QuoteReply With Quote
Old 04-03-2011, 08:33 PM #20
ecjay ecjay is offline
New Member
 
Join Date: Apr 2011
Posts: 3
10 yr Member
ecjay ecjay is offline
New Member
 
Join Date: Apr 2011
Posts: 3
10 yr Member
Default 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.
ecjay is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 10:09 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.