Does anyone have SPINAL MYOCLONUS or PALATAL MYOCLONUS?
 

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 also have palatal myoclonus. It was diagnosed by nasoendoscopy as palatal and pharyngeal myoclonus.

I believe I also have it in the larynx and oesophagus (it spasms on its own).
The myoclonus was clearly visible on vidoefluroscopy (done to check for dysphagia)...which I also have to some degree on the right side.

My palatal myoclonus is clearly visible whether mouth opened or closed (twitching constant in throat etc).

Over a period of years if these get bad, I've gotten major cramps R side facial and R throat/neck area. It burns and cramps and I'm out laying on my left side with ice flannel towels applied to these areas.

I believe that that the oesophageal-stomach junction cramps/spasms and burns with the pain going right thru to the back.

It is so difficult when I move my arms it makes the palatal & other myoclonus worse.

What are you taking for it? How was it caused?

cheers
burnmyo

spinal myoclonus
 

Hi, I have had spinal myoclonus for 20 years and after 18 years of being treated for epilepsy just this week I have been told this is what it is. The constant spasms stop me sleeping as I jerk while awake and while alseep. Keep smiling, and live your life around the myoclonus. The Docs at the Western in Edinburgh, Scotland , invited me to be one of their most interesting cases, (myoclonus is good for something) got to laugh.Please keep in touch it's nice to hear from someone who else with this condition. Lorna

palatal myoclonus
 

Hi Topsie,
I am 35, with 2 young kids, and I have palatal myoclonus.
I understand your sadness. I have had for 15 years and it is getting worse....
I am going to start on antiseizure meds, but I heard there are Doctors in Turkey treating this with radiofrequency.
I would love to talk to you to see if you have had any relief since posting in 2008.
Take care

I have been diagnosed as having segmental myoclonus. One neurologist said it was spinal myoclonus. I beblieve this started about 18 months ago with neck surgery. I ended up with a real bad case of MRSA. The wound had to be re-opened and all the hardware removed. The wound was left open and I had to take antibiotics intravenously for 3 months. One neurologist tried to treat it with medication and I am now waiting on an appointment to see another specialist. Anyone have any ideas about this.

My son has been diagnosed with palatal myoclonus. We are looking for someone to administer botox. We live in Ontario Canada - do you get botox injections? Who does this?

i have what i believe is spinal myoclonus
 

i also have involuntary spasms and 'jerks' in my arms, hands, shoulders, legs, all over. It first statred in my legs ib April, but seems to be spreading quickly. To say the least, i'm terrified. i am having an mri of neck and brain this week and i have an appt. to see a neurologist August 1. i pray is not symptoms of an even more serious disease.

Hi Lorna, I know how you feel, I to have SSM and have been taking pills for epilepsy, which havn't done any good. I really believe the doctors don't know what they are dealing with so they just make guess. I have talked to a Chiropractor who I went to in another state. He told me then that I had some damage to my neck, thought I had been in accident, which I hadn't. He then told me that down the line I might have some problems and guess what, here I am with SSM. I'm going to check with a Chiropractor here and see if he can help. Problem, my insurance only covers 10 visits but if it helps me, I will sure let everyone know. I'm just glad to know I am not alone, thanks for your help, Jeanne:grouphug:

HI, there is a web site very good info on radiofrequency, I went there because a doctor only miles from me is doing this. I changed my mind after hearing patients and what they are going through now after that surgery...Sorry I don't have the webpage exactly but is was easy for me to find...Silver...

I also have segmental myoclonus. after seeing my MRI, I could see where the damage was in my upper back and neck, due to when I was young, carrying egg baskets the wrong way. Meds didn't work, just made me spaced out all the time. I went to a Chiropractor, he tried to fix the damage but was unable to. I quit the Neurologist. I really don't know where I am going next but am still trying and if I find any help, I will be sure to let everyone know. This condition has prevented me from driving, bummer. It is a comfort to read the letters from everyone, even though there isn't many of us in this world. I do have restless legs, take Ropinirole every night, works great. I don't suffer from leg cramps or pain anymore. I also take Gabapentin at night too, helps too. Good luck to you, keep in touch. Jeanne:grouphug:

I too have Palatal Myoclonus
 

Hi! I also have palatal myoclonus. I had an MRI today and they found that my basal artery is curved and pushes on the nerve that controls my tongue, soft palate and throat. It is a birth defect and unfortunately, nothing can be done for it. Has anyone had any successful with medication to help the tremor? I have ear tubes and the noise is much louder than it used to be. I've had the clicking from the palatal myoclonus all my life, but just realized how bad it is when I had the tubes put in this past August. Any help would be great!

I sufferred a near fatal semi accident and lived two months with a broken neck before they discovered what was wrong. Afterwards, I eventually found I am sufferring from spinal myoclonus, and not PTSD like the two nerologist before were trying to say.

Long story short, I don't know what I am looking at and I am wondering how I am supposed to live with my new life. It is kinda scary, but it is still better than the paralysis I was sufferring with. So many questions are going through my mind and I would appreciate it if someone could guide me through what feels like misery.

palatal myoclonus
 

My son was diagnosed with Palatal Myoclonus in 2010. We have tried numerous drugs, ayruveda, acupuncture and now most recently surgical Botox. Our second attempt at the Botox, administered only on one side of his palate to reduce side effects, has stopped the clicks in one ear, but now he has very painful pops in that ear. I did read about someone else who had the same effects after Botox. He also still has pain regardless of the lack of clicking as well as vibrations in his throat. This was not the perfect solution although I have read that it has helped others. Based on my research there are only 2 pediatric ENTs who have performed Botox for this purpose. One is at Children's Hospital of Philadelphia and one at the Children's Hospital of Boston. Please contact me personally by email if you still need the names of these doctors. I do not have permission to post them on this site. I will say that this disorder has been debilitating and my son has missed most of this year of school. He lives in chronic pain from this disorder. I have promised him that I will NOT give up until we find a solution.

Turkey radiofreq?
 

Hi earmom,

Have you heard anything more on the radiofrequency procedure in Turkey you talked of?

I tried googling but found nothing. My partner suffers from palatal myoclonus and the ticking is around 100 per minute too. A couple fo times Botox didnt help. Acupuncture in the UK did help either.

Thanks

palatal myoclonus & radio frequency ablation
 

My son also has over 100 clicks per minute in each ear. Acupuncture didn't help him either. Botox didn't provide relief from the pain, but the clicking did subside (but is not completely gone). He did get popping after the Botox and it is very painful.

I have the medical papers on the procedure done in Turkey. (Google Turkey and Palatal Myoclonus) The paper is titled, "Radiofrequency Ablation in the Treatment of Idiopathic Bilateral Myoclonus: A New Indication" by Omer Aydin, MD; Mete Iseri, MD; Murat Ozturk, MD. Any ENT should be able to pull the study for you if you can't access it on the internet. I will tell you that the process permanently fries the palate and based on the study our ENT said he would never try to follow it. He said that too much data was missing and there is no follow-up to that paper. My copy is very light but I am happy to scan it and email it to you if you provide your email address. It looks like it is from 2006.

Currently, we are going to meet with someone about trying CFR (Cranial Facial Reconstruction). It sounds crazy, and I have no idea where this will lead me, but I have already spoken to one person who has had it done and who got great relief from the pressure this disorder creates. Check out *edit link* I am not promoting it because we haven't tried it, but we are looking into it. And anyone with this disorder knows that you have to try everything you hear about. Keep in touch. Never loose hope!

Oops...so sorry...correction FCR stands for functional cranial release NOT CFR mentioned earlier. My mistake.

Spinal myoclonus
 

I was diagnosed with spinal myoclonus in September. I was in two car accidents a year ago, so I'm sure this is what caused the problem. I guess those of us who have this should feel special because from what I've heard it's a very rare movement disorder. I have made progress, but I live with involuntary movements. I move a lot when I feel sad for someone or when I laugh. I'm quite the entertainment for people. I am thankful to God that I am not paralyzed.

It was suggested to me by my primary care doctor to take bacopa and/or ashwagandha. Bacopa sort of helped at the beginning, but I haven't made any further progress. I am choosing to live my life without medication. Maybe those herbal remedies will help someone.

Hi, there is life after SSM. It won't be easy. I jerk, become dizzy and sometimes pass out. Thankgoodness, this isn't all the time. I have some good days as well as bad ones. The meds the doctor gave me made it worse so I decided to take nothing. I do drive some but not as much as I use to. I have other issues so it makes it seem worse than it really is. Lots of luck to you. This is the only site that seems to understand what we all are going through. Hang in there

wow!!!!
 

I just have well controlled rls and had no idea there were so many types of myclonus and how they manifest. I am so glad y'all are there for each other as I know you.must need peer support. Take care and have a good weekend.

Spine

Hi all. I happened to find this post and was wondering if anyone here can give me some insight.

First let me give you a run down on my history. It is rather long & complicated.

---- 1994 Lumbar surgery for herniated discs;
---- 1995 cervical surgery for foramenal stenosis;
---- 1997 lumbar surgery for "flatback" with Harrington rods;
---- 2000 cervical surgery for "kyphosis" with Harrington rods;
---- 2003 surgery left leg for DVT/blood clot;
---- 2006 Implant Spinal Cord Stimulator;
---- 2007 Pancreatic surgery;
---- 2011 Spinal Cord Stimulator removed;
---- 2013 Intrathecal Pain Pump Implanted

Other medical conditions:

---- Diabetic; Type II
---- Right Kidney disease
---- Congenital absent left Kidney

---- EMG done and conclusion was that I had severe nerve damage in the cervical & lumbar region; severe arthritis & peripheral neuropathy
---- MRI as per the latest on the cervical and thoracic; Mylomalacia - softening of the spinal cord; focal cord atrophy C4-6 levels; severe loss of disc height in cervical area; the Thoracic showed protrusions and mild disc bulges. I think there was mild stenosis but can't remember which levels. I do have the MRI report and have to check it out for further information.

Symptoms:

---- Peripheral Neuropathy of both legs. The left leg is more severe which included numbness in both legs; loss of balance issues; feelings at time that I am walking on pebbles [doctor felt that was related to diabetic issues] pins and needles feelings in toes; burning feeling in upper leg usually the right leg; issues with severe cramping of legs which is intermittent; always occurs at night time; excruciating pain from cramps
----- Intrathecal Pain pump was placed at T-10 level to help the mid-low back issues. It works fairly well in that while I may have pain at times it is on the mild side.
---- Due to neck issues of myelomalcia; focal cord atrophy I have symptoms going from weakness in the arms; weak feeling at times in the hands/fingers area; radiating pain into both shoulders. Centralized pain around the spinal cord; feeling of pressure in this area.

---- But here is what brought me to this particular posting. For probably a few weeks at this point I guess I started to have "involuntary movements." It tends to happen while I am lying down. I can be watching TV and all of a sudden its like there is a "jolt" to usually the upper arms/shoulder areas. I think I can probably say once in a while it was a severe movement that occurred while I was asleep and caused me to wake up. Once in a while I may beel it in other spots then the upper extremities. Sometimes the legs but mainly the arms/shoulders. Its like when a doctor does a knee-jerk test to the patella I at times get my arms will react like a knee would when the knee responds to the knee-jerk test.
If I am correct there are similar tests that are done to the biceps and triceps.
I normally wouldnt make an issue out of something. If it happened once or twice I probably would have thought it was strange but let it go if it stopped. But it seems to be an ongoing problem at this point in time. Not sure what to make of it.

Just another note on my history. In 1994 I developed tremors of the left arm. It would be severe tremors at times. So I saw a neurologist and after numerous office visits; EEG; EMG; MRI of the brain the conclusion was that I had Parkinson's disease based on examination and I guess test results ruled out other conditions. I did get a second opinion which said 75% that it was Parkinsons. I ended up on 3 anti Parkisnons medications of Sinemet; Eldypryl and Amantidine.
In 1997 I was having surgery on my lumbar area so my orthopedist had me see a neurolgoist for a consult prior to surgery. His opinion was that I did NOT have Parkisons. He thought it was Essential Tremor.
I ended up seeing a specialist in California that ruled out Parkinsons and Essential Tremor. He could NOT specify what the tremors were caused by. Whether any of this has any impact on what is occurring NOW I cant say.

Any comments/input on the involuntary movements? I see the term "myolconus" not sure if that is part of what is going on with me. It does seem that the involvuntary movements do occu while I am at REST rather when I am ACTIVe like typing.

Any input would be appreciated. Thanks for listening and sorry for such a long post but I had to include everything.

follow-up for PM
 

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.

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.

Topsie have you found anything to help?
 

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.

I have been looking for someone who has been there
 

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

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

hi
 

please contact.thanks
john

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

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!