Myoclonus Nightmare

i started with problems in 1998 at the age of 19 I am now 31 from England.  I started with flu like symptoms and then wham I started one night just to shake all over i was fine after for one day  and then i started every night for 10 nights jumping.  My legs would jump into the air and my back would arch and my teeth would clench, this was in bed for 1 to 2 hours at a time the rest of the time i was twitching.  This went on and the GP because when they came out could not see anything as I only did this at night thought i was making it up and did nothing. I got sent to see a man at the hospital who was not sure if I had ecoli or a kidney infection so put me on tablets for a water infection and did some bloods.  Until I started during the day as well and then one day the jumping would not stop and the Gp came out and rushed me into hospital at this time I think it had reached its peeck and the jumping stopped.  The doctors at the hospital sent me home despite the fact that I was twitchy, I could not stand noise, my back and everywhere hurt including my neck and I was so cold and shivery.  I was left with muscle spasms all over my body the muscle contracts it then calmed to mainly my legs.  I cant walk far with out using a wheelchair and If I do too much my spasms start off.  I still dont like alot of noise and I still twitch now and again, my nerves are shot, I get very shivery if I do too much. and my legs can hurt. Stress effects me and so does heat. Travelling to hospital appointment is a must but I am bad afterwards just travelling there  and back and sitting for the appointment.  I cant stand too long either.  I had to find my own neurologist who put me on Tizanadine and dantrium tablets which have eased the spasms but I stiil cant do alot.  I am unable to even work.  this neurologist could not tell me what was wrong with me he said he would treat the problem as there was not name.  Now 12 years later I am seeing a new neurologist who listened to me and said straight away that I have Myoclonus. and it was probably caused by a virus.  the thing that we have not yet discussed is that I had Leukaemia when I was 2 and due to what is called late effects can appear years later from the treatment we dont know if this is the cause of the myoclonus.  Anyway he is running tests and when I see him next I will discuss it with him.  But It is so frustrating when you dont know what is wrong.  I even got sent to see a shrink.  Why do these things happen and why did the first neurologist not know?  Is there any cure for this as my life is passing me by and I dont know what to do. 

eleroo eleroo
31-35, F
6 Responses Feb 26, 2010

This was written over two years ago. How are you now? I have had it for 7 months. After having a seizure from too many meds taken for a very painful flare of interstitial cystitis, I bladder condition I have had for 19 years. Tell me how you are. I am so sorry you have had it for so long.

A lot of people who know me have no idea what I've been going through with myoclonus, tremors and muscle twitches over the last couple of years. There's no way for my family to miss it, but only my closest friends know what has been going on and that's because I fill them in when they ask about it. I think it's hard for most people to grasp what we go through. I think it's like having a baby. People can try to tell a woman or a couple what it's going to be like, but you never really get it and understand until you have one yourself.

Hi everybody thank you for your comments. I know what you mean about lack of knowledge of myoclonus in England. When I mention it I just get told oh it another word for muscle spasms. Now 14 years later the Neurologist told me that I had myoclonus but to put a name to it as I kept telling him that I wanted a proper name and diagnosis he has said Post viral muscle disorder. my gp has confirmed this as being M.E. now why nobody said this years ago is behond me. But even now when I say the word M.E I get funny looks and comments. especially when people ask to have the condition explained to them. How do you explain the spasms your body goes into and the pain and discomfort this causes on a daily basis. My Gran is the worst one for not understanding. She said the other day to me and I quote "but you are ok you dont have this condition all the time and everyday" I snapped and said oh yes I do. She then said well our Janes friend has the same as you and she doesnot do this. trying to get through to her and others not to compare me with other people as each person is different and just because you cant see the spasms does not mean that they are not there.

I had a fit the other night my muscels would not settle and the fits that I used to have jumping about I was like that layed on the settee. I get sooo tired as well and days when I can put one foot infront of another. But boy when the spasms start. I have been on my meds for years but I have tried others and I have had a reaction to them.

The word Myoclonus in England means nothing to people. Just another word for muscle spasms. What are muscle spasms you are then asked and the explaining goes on and on. you cant win.

Hi there

I commented on someone elses' experience earlier, but essentially I have myoclonus of the stomach which does result in very violent spasms.
I was undiagnosed for years and again people thought it was in my head as my stomach would never 'perform' whilst seeing a Dr until I met the best neurologist ever (in England) I take clonazepam each day which seems to control it (I still have some 'attacks' my latest lasting 3 days, this is my 4th day at home due to exhaustion).
I've found yoga/pilates/swimming helps as it relaxes the body and stress does majorly affect this condition.
I have a full time stressful job at a top investment bank, I don't let this hold me back. They are aware of my condition (one of three conditions I have) and understand that sometimes I have to be at home.
It's very important to know where your condition comes from. I don't know 100% but putting pieces together with my neurologist he thinks it was due to a bad car accident I was in, which we think resulted in the widening my central canal in my spine that I have, we can't be certain as there is no before or after MRI, but it's widended directly behind my tummy where I get the spasms. So I also work on strengthening my back through the exercises listed above and physio.Sometimes it's hard to fit it all in and I don't exercise as regularly as I'd like, also sometimes I'm unable to when I've had bad seizures, but where I can I will as I know it all helps.

Good luck to all, happy to discuss further with anyone.
xx

A combination of piracetam, clonazepam and serotonin in the form of SSRI helped tremendously but it is costly. However, I have to live with this so I have absolutely no choice but to take the the combination of medications on a regular basis.

Knowledge of Myoclonus in England is pitiful at best! I have had it for 17 years and the treatment I have received from G.P's and Neurologists has been very hit and miss. I have tried every combination of drugs, they work for a while and then I build up a tolerance and the spasms become even worse. <br />
You have to be very persistent and stand your ground with your doctor, I have had lots of arguements with my doctor and have finally been referred to a sleep clinic in Manchester. Myoclonus has ruined my life and I wish more research was being done in the UK.<br />
<br />
Bev