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

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