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.

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?

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

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

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