You sure are tough and an inspiration to us all to keep hoping.

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.

Hi Pain
Yes, I have both forms of myoclonus and have received 5 different doctor verifications that I do indeed have these two rare forms of myoclonus. Best of luck to you. Topsie

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 had myoclonus since about 8 years old am now 26. I have arm and neck jerks that are very painful and annoying but mostly embarrassing. Cant even hold a cup of water. Am always tense and stiff and very anti social. I feel like I'm trapped inside myself because i want to be normal but cant. I am extremely intelligent but is useless since I can't handle much without hurting myself or things. Is there anyone else like this if so please contact me asap i dont know anyone like me.

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 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

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.