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.

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

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.

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?

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

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.

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

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

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.