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.

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

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 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.

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.

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.

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