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-   -   Does anyone have SPINAL MYOCLONUS or PALATAL MYOCLONUS? (https://www.neurotalk.org/movement-disorders/52250-spinal-myoclonus-palatal-myoclonus.html)

earmom 03-20-2013 10:15 AM

follow-up for PM
 
Quote:

Originally Posted by earmom (Post 944595)
Oops...so sorry...correction FCR stands for functional cranial release NOT CFR mentioned earlier. My mistake.

We tried FCR, functional cranial release in March, 2013. We watched this doctor slow the clicks and heard them stop!!!! This is not a cure, but it is the best thing we have tried to date. My son only clicks now when he swallows, yawns and sneezes. He still has pain but not all the time. THis procedure was done by Dr. John Lieurance. He works will all kinds of movement disorders. You can witness some of what he does by looking at clips on u-tube by looking for palatal myoclonus. We also recently became aware of a FaceBook page for PM suffers. It is an active web link with lots of information. If you suffer from PM, you might want to join that group and try FCR. It was a miracle for my son. WE have a long way to go, but we are now headed in the right direction.

pippi1401 05-13-2013 06:18 PM

Pipp1401
 
Hi,

I have been suffering from Spinal Myoclonus for 15 years or so now, I have self diagnosed as the Neurologist I saw years ago and the MRI Spinal and brain scan showed nothing, they just wanted to put me on horrid drugs used for epilepsy. My jerks were severe and when I very occasionally get them now, if laying on my back my back will arch up violently and knees come up toward my stomach, I used to get 60 of these in very quick succession, to alleviate it I would stand on our stone floor in the bathroom and put my spine against the coldest wall, it was almost like unearthing!

About 7 years ago I decided to cut out everything in my diet and gradually re-introduce, and found i cannot tolerate ANYTHING with an E NUMBER or ANY preservatives at all... No cut bread, no supermarket cakes, no pizza (unless I make the dough myself and definitely no alcohol (makes it much worse). I followed this and found months, years of RELIEF, certainly not 60 jerks a night every night as it used to be.

However, I have tonsillitis at the mo and have been prescribed Clarithromycin (these drugs are yellow coloured, apparently the drugs company feel that they need to be yellow for some reason) I suffered last night (due to the colouring) and know that I will suffer until the course is finished. I beg all of you fellow sufferers to look at what you eat, I had a terrible time with a Cadburys Creme Egg due to the colouring, takeaways, burgers (shock horror if you eat the buns from the golden arches). PS: I did also have a bad horse riding accident and a neck accident years ago, whether this was the primary cause or not or often wondered if it was the epidural I had during childbirth.

Ginacbird 10-21-2013 02:24 PM

Topsie have you found anything to help?
 
Quote:

Originally Posted by Topsie (Post 347863)
Hi I am brand new to this site and I am so glad to have found somewhere to begin my search for support and God willing (hopefully) find someone else who has my conditions. I have Palatal Myoclonus (1 in 2 million people) and Spinal Myoclonus (1 in 3 million people). In very quick definition :) (it is a long definition so "in a nut shell") Palatal Myoclonus (I have had for 5 years- starts in the 30s- got when I was 31) results in constant ear popping as the eustation tube spasms across the palate of my mouth which results in anywhere from 5 pops per minute to 15 pops per minute to 35 pops per minute to even up to 72 pops per minute! March 2007 we thought it had spread into my neck etc, however Stanford diagnosed my second type of myoclonus - Spinal Myoclonus. This results constant and involuntary spasms of my arms, shoulders, neck, back, stomach etc. Anyhow, these myoclonus conditions have been very challenging and it was devasting to me. I am pulling through these conditions with my head held high (smiles- finally) and I am determined to just do the best I can with what I have been dealt. IF YOU OR ANYONE YOU KNOW HAS SPINAL MYOCLONUS OR PALATAL MYOCLONUS PLEASE WRITE ME. I WOULD BE EXTREMELY GREATFUL TO FINALLY TALK WITH SOMEONE WITH THESE CONDITIONS. Thank you and best of luck to everyone. Topsie

I am wondering what you have tried since I see the date being 2008. I have Palatal Myoclonus and labyrinthitis which has given me some nerve damage. I am not sure if I have Meniere's disease as I was diagnosed with it and appear to have some spells with that too. Just wondering what people are doing to treat this.

Ginacbird 10-21-2013 02:37 PM

I have been looking for someone who has been there
 
Quote:

Originally Posted by earmom (Post 967716)
We tried FCR, functional cranial release in March, 2013. We watched this doctor slow the clicks and heard them stop!!!! This is not a cure, but it is the best thing we have tried to date. My son only clicks now when he swallows, yawns and sneezes. He still has pain but not all the time. THis procedure was done by Dr. John Lieurance. He works will all kinds of movement disorders. You can witness some of what he does by looking at clips on u-tube by looking for palatal myoclonus. We also recently became aware of a FaceBook page for PM suffers. It is an active web link with lots of information. If you suffer from PM, you might want to join that group and try FCR. It was a miracle for my son. WE have a long way to go, but we are now headed in the right direction.

Dear EarMom,
I have a lot of questions about Dr. John, and this procedure. I live in OH, and it is a very long way and $$$$ to travel to Florida. If it works, then it would be worth it. I have been looking and looking for so long on the internet for someone who was talking about it. I just couldn't believe people would do this, and then not tell others about it. I was so excited when I saw your message. I have so many questions. Do they take any kind of insurance. I believe I saw your video which is the newest one available. I am so excited you got to go down and see him. I just need help from others who have done it. My husband wont even talk about it as he thinks it will only cost a ton of money, and then be a huge waste of time. Please give me some information which would help my husband to believe this could help me. I have not been able to do much of anything for 2 years now. I can't drive or work. I have other problems as well, but I would like to see how I feel getting this one under some kind of control. I thank you for any information you can give.
Gina

ClareyB 04-29-2014 04:46 AM

Quote:

Originally Posted by Topsie (Post 347863)
Hi I am brand new to this site and I am so glad to have found somewhere to begin my search for support and God willing (hopefully) find someone else who has my conditions. I have Palatal Myoclonus (1 in 2 million people) and Spinal Myoclonus (1 in 3 million people). In very quick definition :) (it is a long definition so "in a nut shell") Palatal Myoclonus (I have had for 5 years- starts in the 30s- got when I was 31) results in constant ear popping as the eustation tube spasms across the palate of my mouth which results in anywhere from 5 pops per minute to 15 pops per minute to 35 pops per minute to even up to 72 pops per minute! March 2007 we thought it had spread into my neck etc, however Stanford diagnosed my second type of myoclonus - Spinal Myoclonus. This results constant and involuntary spasms of my arms, shoulders, neck, back, stomach etc. Anyhow, these myoclonus conditions have been very challenging and it was devasting to me. I am pulling through these conditions with my head held high (smiles- finally) and I am determined to just do the best I can with what I have been dealt. IF YOU OR ANYONE YOU KNOW HAS SPINAL MYOCLONUS OR PALATAL MYOCLONUS PLEASE WRITE ME. I WOULD BE EXTREMELY GREATFUL TO FINALLY TALK WITH SOMEONE WITH THESE CONDITIONS. Thank you and best of luck to everyone. Topsie

Hi Topsie, I am brand new to the site also, in fact just now!
My niece has Myocolnus in her right leg/hip. She suffers with about 10 episodes a day and most days falls over when it relaxes. We are looking into a course of Botox injections into the muscle which may help. It is very challenging as she was 14 when she started with this and will be 19 in November. She has missed pretty much all her college years and we are desperately trying to find help for her. Has any one mentioned these injections to you?
Thanks Clare x

john1947 02-21-2015 07:37 PM

hi
 
Quote:

Originally Posted by Topsie (Post 347863)
Hi I am brand new to this site and I am so glad to have found somewhere to begin my search for support and God willing (hopefully) find someone else who has my conditions. I have Palatal Myoclonus (1 in 2 million people) and Spinal Myoclonus (1 in 3 million people). In very quick definition :) (it is a long definition so "in a nut shell") Palatal Myoclonus (I have had for 5 years- starts in the 30s- got when I was 31) results in constant ear popping as the eustation tube spasms across the palate of my mouth which results in anywhere from 5 pops per minute to 15 pops per minute to 35 pops per minute to even up to 72 pops per minute! March 2007 we thought it had spread into my neck etc, however Stanford diagnosed my second type of myoclonus - Spinal Myoclonus. This results constant and involuntary spasms of my arms, shoulders, neck, back, stomach etc. Anyhow, these myoclonus conditions have been very challenging and it was devasting to me. I am pulling through these conditions with my head held high (smiles- finally) and I am determined to just do the best I can with what I have been dealt. IF YOU OR ANYONE YOU KNOW HAS SPINAL MYOCLONUS OR PALATAL MYOCLONUS PLEASE WRITE ME. I WOULD BE EXTREMELY GREATFUL TO FINALLY TALK WITH SOMEONE WITH THESE CONDITIONS. Thank you and best of luck to everyone. Topsie

please contact.thanks
john

Lara 02-21-2015 07:41 PM

Hi John,

I just wanted to let you know (in case you didn't already) that Topsie posted way back in 2008/2009.

john1947 02-22-2015 07:50 PM

Quote:

Originally Posted by Lara (Post 1125397)
Hi John,

I just wanted to let you know (in case you didn't already) that Topsie posted way back in 2008/2009.

thanks Lara,im trying to find others who have myoclonus.If you have any ideas about finding others please do share with me
thanks
john

MJBarclay 12-01-2015 06:12 AM

Palatal Myoclonus
 
Hi,

I hope you all find this post to be extremely helpful. I've had palatial myoclonus since age 31. Diagoned in 2004, first told I had epilepsy as was given Depekote. Didn't work. Many smart doctors gave me meds, had never seen throat spasms in someone so young. Many MRIs, no lesions. Bottom line: Palatal Myoclonus is a descriptive condition. Clozepam helps. But fades over time. You need to see a chiropractor to do low back and neck adjustments. I used to take 4 mgs of Klonipin per day. Now, 11 years later, I take 4 per week. I do yoga. I stretch. I get bi-weekly adjustments because the nerves are firing because of stress and pressure on joints. You have to do the work. Stretch, have a professional move bones. It works. It's not perfect, but I almost couldn't survive until I got targeted Chiro treatment. Yoga is also amazing. Get your body right, it takes time, but pays off. So Chiro, yoga, back alignment, and some Klonipin help a ton. My neck is firing off now, my low back hurts, so I will do yoga again tomorrow , then an adjaument. Taking just drugs is not the answer. If you need more guidance, let me know. I've been at my worst, 8 years in, now at my best 11 years in. At 41, best shape of life, still tough at times, but I can get through it. You can too. Let's go!


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