Dystonia?

[Trishbel]

Hi,
I am a 46 year old female. At age 13 was diagnosed with epilepsy. Had siezures once per week at night and was semi aware of seizure as it started, then unconcious and would wake up breathing rapidly and confused. Have been on dilantin since then and it has controlled seizures for over 30 years.
Over the yaers I would have problems with severe muscle contortions and spasms of my right leg. Nearly 100% of the time it would bother me at night only, last for about a week as it tapered off.This would happen at most once a year.
7 Months ago I had a physical, bloodwork to check dialntin level, dr called to say level was very high (i believe over 30) and told me to cut my dosage from 400 mg/day to 200mg. At same time I was taking phenytoin instead of dilantin for the first time. I started to feel tension and tingling in right leg and getting muscle spasms at night, within a week I got the dilantin back and was back up to 400 mg.Weaned off dialtin(had low vit d) since then and on to keppra. About a week after I was at work and my leg from hip down was having severe contortions and spasms, feels like my bones will break as opposing muscles work against eachother. This would happen in clusters throughout day and night(much worse at night) for a week. PCP was confused and I went to neurologist. Tried muscle relaxers, flexerol and baclofen with no relief. Neurologist did EEG, during which I had an episode, but nothing showed on test. MRI showed plaques near ventricles in brain, tested for MS, negative spinal tap.Said my brain was indicative of MS or someone much older or have been living a hard life, not me.
Symptoms of night spasms and daytime muscle twitching in thigh and constant toe twitching remain, severe contortions subsided, until next attacknearly 6 mos later, again at work. Knocked me off my feet and was even more severe, again lasted about a week and same residual twitching is ongoing. Afraid to go back to work to see how bad next attack will be!
Could this be from brain plaques, dystonia fron dilantin, could the dilantin have been supressing something? What to do next?

[Joyful50]

I have a Mitochondrial Disorder. I also was diagnosed with Chorea, a movement disorder also, like dystonia. I seem to have my episodes more when I am relaxed. Is that the difference between the Chorea and Dystonia? Because sometimes I have episodes where my muscles contract so hard for a few minutes that I am actually sore for a couple of days after. I am led to believe it may be related to the Mitochondrial by one dr and then these episodes may be related to another neurological problem altogether.
Do you have any answers or ideas?
Thanks
Leslie

[Dr. A. Srivastava]

Hi, Thank you for your question. In medical terms involuntary muscle contraction called dystonia. This may be affected by nerve impingement, the position of the neck, and is often relieved when you are relaxed. It is difficult to find any specific cause for dystonia, however botox injections may be some help to prevent the contraction from occurring. I would recommend evaluation by a neurologist that may benefit you. I hope you find the information I have provided useful to you.