Originally Posted by Topsie

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

Originally Posted by pian

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.

Originally Posted by walker604

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.

Originally Posted by burnmyo

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.

Originally Posted by pian

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.

Originally Posted by Buttons

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?

Originally Posted by Topsie

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

Originally Posted by Topsie

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