Hi, I have have heavy mussle spasms in my upper body, and tremors for about 5,5 years now. In Dutch they called the spasms Myoclonieen, so that probably the same as Myoclonus. (I don't have a medical dictionary here).

The diagnoses I have got is; Conversion disorder or functional neurological movement disorder. Or -We don't know-

But the strange thing is that Parkinson medication (dopamine), helps a great deal for me. I'm a riddle for the medical world, because all my symtoms don't add up and the medication isn't suppose to work.

The last neurologist advised to Botox injections in my backmuscles. I didn't got much information about it. In the Netherlands it's only used on this scale in a medical trial. So i'm curius to read more here.

But for now I first want to see how far I can get with the Parkinson medication.

Keep posting!

Sophie

Search on here for Aunt Bean... and read about her fava beans... they have worked wonders for me

Thanks, I will look into it. Fava beans (broad bean or in Dutch; tuinbonen) are very common here, so I'm very curius about it. But I have to look how much and how to take them, to have them helping me.

bye Sophie

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

topsie if you have any advice for me I would be glad to hear it I have lumps in my bask spasams and they pull on spine and goes all the way to feet alot of pain thanks tonijo

I have been told that if the carba/dopa helps it is probly parkingson or parkinsizim maybe check into it I also take carba /dopa (siniment ) and it helps my tremors so maybe something to check out tonijo

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?

Hi there, i have just joined this group because i would like to know more about Myoclonus, i have severe tremors in my lower back, but only at night, this can happen between 1 and 6 times a night and last from 10 seconds to 2minutes, it never happens during the day (which is good) I have been to the Doctors and have been sent for Physiotherapy and now a course of Acupuncture, but have not been diagnosed with anything, can you help please.

Hi--I just wanted to comment, if I might, at acupuncture treatments for myoclonus. While most acupuncturists or those that adhere to Traditional Chinese Medicine will tell you that multiple sessions are needed to "cure" or "treat" an illness, for me there wouldn't be enough to ever convince me of going back. As soon as I spasmed, I could feel all of the needles that were in my legs. I couldn't wait for them to be removed--it was like torture. While there is no cure--and trust me when I say that I've (most of us) tried most everything--IMO, I would rely on PT more than acupuncture (though I've heard that acupuncture is excellent for those who suffer from migraines or any sort of pain disorder). Or if you are looking for a less invasive form of TCM, but one that increases blood circulation and oxygen flow like acupuncture, I would go to someone who is familiar with acupressure which is very similar but is non-invasive and does not break the skin barrier. I hope this helped.

After suffering a bad fall in April 2011 I kept complaining of a pinching feeling and loss of leg function. Although S1J's were identified as part of the issue, no one could tell me what it was. I was in alot of pain and nothing was helping with the inflammation.
On October 28 I had cortisone injections to both sides of my tail bone. It felt like they had hit a nerve but this was not the case. Within one week I was having violent jerking movements to my right side, mainly arm, torso and neck. The main base of the pain coming from the buttock area. Again, no one could make any sense of it and I was made to feel by one specialist that I was making it up.
I was put on large doses of morphine to combat the pain. It took 3 months to get in with a Neuro. It took him 5 minutes to identify spinal myoclonus as a direct result of the trauma from the fall. The cortisone was the catalyst, sending the nerves into complete hyperdrive.
He advised that all the codiene based meds I was taking were making the symptoms worse.
For two weeks now I have been morphine free and am on Clonozapam to control the tremors. The medication makes me very dopey and so far the jerking has been worse than ever lasting up to an hour. I am tired.
The neuro assures me that this will go away in time but cannot tell me how long. I am worried about being on these meds long term and am reading alot of stories of people who never really recover.
I feel really alone in this and it is made harder by peoples stares. My kids say I look like one of the Thunderbirds puppets!