The long process of diagnosis has taken me to a PHYSIATRIST ( a rehab Dr) who has sent me to a Neuro (something) NOT a Neurologist. I had an EMG and nerve conduction testing.
A nerve conduction study (NCS) is a test that measures the speed and strength of electrical activity in a nerve. The test can gather information about the structure and function of both muscle and nerve.
Nerve conduction studies are often done along with electromyography (EMG).
the tests show that I have muscle damage. This Neuro ( I think it's Neuropathologist) ...thinks I have a spinal condition. I am going for a lower spine CAT scan. Which would be treatable! Imagine!!
These are all tests that all of you with movement or muscle pain should ask for.
I was refused by my GP and dismissed as a patient. At least now I have been validated. I'll try to remember to post CAT results.
As you should have MRIs of brain and spine EVERY year. Elaine
THanks sooo much for sharing this. I have had a similar undiagnosed condition as well as full body convulsions. I don't even know what kind of doctor to go to anymore because I can't stand the smirking and harshness when they can't figure it out. I can still hear the paramedic saying "it's not legit" running through my head. The last thing I would ever do was flop around in the middle of the street in front of my neighbors for attention!
The seizure meds had so many more side effects than just making the movements worse. Such as hair loss, excessive fatigue, dizziness. A person should not be on those meds if they do not have seizures. TRY to get the Drs to acknowledge that they should not have put me on those meds. That will never happen!
I have been released from physio therapy as they do not know how to manage these episodes. A Catch 22. Physio helps, but exertion brings on the movements. For now, I'm on my own.
Thank you so much for posting this! I truly feel for you as I have had these same symptoms for a year and a half now but mine involve my whole body. It's so hard to explain to people that you have no control over your movements.
And I too was put on anti-seizure medication and my symptoms became worse. Didn't realize the meds could be the culprit of my worsening condition until now. Thanks for the info!!
I refer to mine as "episodes", "movements" or as what the are "Paroxysmal dystonia". Depends on who I'm talking to and what they'll understand.
It's a hard condition to explain to those who don't have it. And also because mine might be caused, by another (as of yet) undxed condition (might be nerve damage), it confuses people.
You look a lot like me, which is somewhat comforting to know. Is it confined to just your arms? I've had a condition since I was 16, but all seizers were brief. When I started working in a restaurant, they got worse over time, lasting for 5 hrs and 20 mins once. My arms, legs, and neck all jerk and flail though, sometimes repetitive, and sometimes flowing through my whole body. Imagine doing nothing but that for 5 hours. When it lessens I look as shown in the video.
I feel for you. Only a person who suffers such conditions can ever realize the effect is has on your life. Are yours seizures? I have a movement disorder. I am conscious all the time and am aware of what's going on. It's worse with fatigue and exertion. The only time it went beyond my arms was when I was wrongly put on seizure meds. I had side effects. Now with no seizure meds, it's mostly my right arm. I go to physio therapy which helps some. But physical activity makes it worse. Catch 22.
I have come to realize the lack of care I received by the medical profession. This is PAROXYSMAL DYSTONIA, with side effects from meds. I hope it helps someone else to know this. It is a movement disorder, brought on by fatigue and exertion. I have come to realize that the seizure med I was on Valproic Acid, (I don't have "seizures")made the movement worse and inconsistent. After being off that med for some time, the movements are now consistent. Physio therapy helps some.
PAROXYSMAL DYSTONIA - in my case, might be caused by nerve damage. It's all still a 'MYSTERY ILLNESS" to everyone. The worsening symptoms were caused by being put on seizure meds, when I didn't have seizures. It took me a while to realize this, because of the on/off nature of paroxysmal dystonia. For a time I actually thought the seizure meds helped me, when they were actually making it worse. It's been a confusing time.
I had these when I was on Sinequan, Lithium and Prozac. I told the dr I was jerking involutarily and almost dropping things - he had no clue what I was talking about; I had to do my own researach. I will never, ever go back on those things.
I have been going to physical therapy for 4 months now. My condition progressed to the point of being in a wheel chair. My physical therapist is convinced that I have NERVE DAMAGE, which is causing DYSTONIA. I am waiting for further testing at a SPASTICITY CLINIC.
The "psychogenic" suggestion by a Neurologist, has been dismissed. If anyone else is suffering such symptoms, I STRONGLY encourage you ....do not accept a "psychogenic" dx.
No I haven't been tested for that. I'll look it up.
I've been told that I have dystonia and myoclonic jerks. But have been told it's "psychogenic"...which is a dx, many of us with these conditions have to battle. I don't have movements 24 hours a day. I get them from fatigue or activity. Which in my opinion is
PAROXYSMAL DYSTONIA....but Neuros can't be bothered to put any effort into a dx. So I go without treatment. I go for physical therapy and they don't know what to do about it.
(I think I know you from Wego :P) anyway I have hemi dystonia with myoclonus in my shoulders and upper torso. My Myoclonus mostly occurs at rest but I had one episode while driving that scared me silly. I have been trying to find a clear video of it to show friends and fam... For a while, I kept reading about it and asked myself if my jerks were myoclonic... because i didnt know what it looked like. Now i can say.. yep- thats me.. Thanks for posting this!!
YES u do know me! This video is of my original movement episode. Fatigue causes my episodes. This was around 6 pm...after I'd tried to do housework and cooking meals.
I have posted a 2nd video, which is worse. But in that video...I am on seizure meds which caused severe fatigue. I believe the seizure meds made it worse.
Off the seizure meds, I'm pretty much back to having episodes like this, that hasn't changed in quite some time. I am not on any other meds which would cause this.
Sue - I don't drive anymore. The exertion of driving is too much and more than 50% of the time brought on an episode. Because I am more educated about myoclonus and dystonia....I can now watch this video and pick those particular movements out.
theres a medication called amantadine, that they use in severe cases, its called symmetryl or amantadine. its supposed to help in the cases of dystonia that don't go away. or if you're taking neuroleptics, try stop taking them, or switching to clozaril.
.I still have no dx.Over this past year I've had 3 changes in the pattern of movements. This video and the second video I've posted, And 3rd progression we haven't been able to catch on video.
Seems more dystnonic. It's my belief that I have PAROXYSMAL/DYSKINESIAS DYSTONIA..(SP?it's late at night as i Post this - lol)
The reason I believe this is because I have periods of no movement. I will attend a local support group soon and get more hands on info.Thanks to all that responded.
blc341 - I am not currently on any meds that would cause this. My episodes are not constant and I have no idea when they will come, so medication is likely not an option.
I just had a medical procedure that caused fatigue and it brought on an episode. That Dr (not a Neuro) said he'd seen this before and that it was a partial seizures. It's SO FRUSTRATING!! I have just entered my 2nd year of this. Now use a wheel chair to leave the house, because of the fatigue.
I should add, that I have severe fatigue and I find that any amount of exertion will bring on an episode. Lately I've been having more DYSTONIA than anything. Dystonia is quite painful as it twists your body into awkward positions...as if being pulled by an invisible person.
I've had this for almost 1 year. I belong to several Yahoo support groups. One for dystonia and another for tremor. I personally don't know anyone who has been cured. I know that if a Neurologist can dx your condition, there is treatment that might help. Myself...I have no dx as my Neuro said I am hard to dx. I also have some other problems which are making it difficult. Such as parathyroid. Possible Wilson's Disease. Excellent site to visit WEMOVE.
it get these too, but only when im sitting in my chair falling sleep or if im daydreaming or relaxing in the morning. It feels like a jolt through all my body. I believe its one of the side effects of my wellbutrin Im taking.
I am on Wellbutrin, but in my case I know it's not the case as I have gone off for long periods of time and it never made any difference for me. Though it may be the Wellbutrin for you. Yours sounds like myocolonus. Theres an excellent site...WEMOVE that you might want to visit.
yea when I loved my wellbutrin dose they started to go away. I think it has to do with the norepinephrine that the wellbutrin increases in the body. Causes the adrenal glands to be more active. It only happens when I fall alsleep sitting upright on the desk. Never happens when Im in bed. 2 days ago I had this almost uncontrolable urge to keep stretching.
I have posted a second video which shows the progression of my condition. The neurologist says it is not a "text book case", may be a "rare disorder" and might take some time to diagnose.
I get these but harder. Legs and arms fail. Electrical jolt that's painful for a sec. No seizures on 3 day eeg. sometimes 30-40x a day. Then none for a while.
Led - Thanks very much for taking the time to respond. It really does help to know I'm not alone and that might be help for me. I'm feeling really depressed, but you are all giving me hope to push the Dr further to find a dx.
Even though I am meds, the "tremors" /"seizures are worse than in this video. They are less frequent, but worse.
I begin to feel better so try to do a few things in a few days. After a few days the "tremors begin and really hurt my muscles because I can't stop them.
Thanks for your comments. My EEG and MRI were normal. I've been doing a lot of research and found that even normal results could possibly be wrong? Have you heard of that or had that experience?
I am on Valproic Acid which helps, but doesn't keep me on a regular pattern. I alternate between good and bad weeks. I'm so tired all the time.
Yes I have these too. My epilepsy, well finally working out all the symptoms I have experienced, come down to 3 different seizures so far, Tonic clonic, Myclonic and Simple partial. I don't know if you have any other seizure types, but I know when you are tired or coming out of sleep or going into sleep or overtired this seizure type occurs, it occurs in one muscle group at a time and can affect the thigh movements a lot.
do they hurt
jackdal39 10 months ago
DEE D DEE DEE DOH DOH DEEE.
MarFish101 1 year ago
The long process of diagnosis has taken me to a PHYSIATRIST ( a rehab Dr) who has sent me to a Neuro (something) NOT a Neurologist. I had an EMG and nerve conduction testing.
A nerve conduction study (NCS) is a test that measures the speed and strength of electrical activity in a nerve. The test can gather information about the structure and function of both muscle and nerve.
Nerve conduction studies are often done along with electromyography (EMG).
ElaineCA58 1 year ago
@ElaineCA58 - PART TWO
the tests show that I have muscle damage. This Neuro ( I think it's Neuropathologist) ...thinks I have a spinal condition. I am going for a lower spine CAT scan. Which would be treatable! Imagine!!
These are all tests that all of you with movement or muscle pain should ask for.
I was refused by my GP and dismissed as a patient. At least now I have been validated. I'll try to remember to post CAT results.
As you should have MRIs of brain and spine EVERY year. Elaine
ElaineCA58 1 year ago
DRS I HAVE SEEN before a possible dx.
Neurologist (s) plural (MRIs of brain and upper spine were normal)
Rheumatologist (I had elevated blood work in relation to muscles)
Endocrinologist (dxed with hyperparathyroidism) low Vit D.
Physiatrist (rehab Dr) (sent me onto the next specialist)
and now Neuropathologist (if I have the name correct)
Where I had the EMG and NCS , blood work and CAT...which have so far shown muscle damage...indicating a spinal condition.
DON'T GIVE UP!!
ElaineCA58 1 year ago
@ElaineCA58 I looks to me like PLMS(Periodic limb movment sydrome) commonly called (restless leg syndrome) It can be very torturious!
jasonsinlove 11 months ago
THanks sooo much for sharing this. I have had a similar undiagnosed condition as well as full body convulsions. I don't even know what kind of doctor to go to anymore because I can't stand the smirking and harshness when they can't figure it out. I can still hear the paramedic saying "it's not legit" running through my head. The last thing I would ever do was flop around in the middle of the street in front of my neighbors for attention!
Peace and Love
hayyalife 1 year ago
The seizure meds had so many more side effects than just making the movements worse. Such as hair loss, excessive fatigue, dizziness. A person should not be on those meds if they do not have seizures. TRY to get the Drs to acknowledge that they should not have put me on those meds. That will never happen!
I have been released from physio therapy as they do not know how to manage these episodes. A Catch 22. Physio helps, but exertion brings on the movements. For now, I'm on my own.
ElaineCA58 1 year ago
Thank you so much for posting this! I truly feel for you as I have had these same symptoms for a year and a half now but mine involve my whole body. It's so hard to explain to people that you have no control over your movements.
And I too was put on anti-seizure medication and my symptoms became worse. Didn't realize the meds could be the culprit of my worsening condition until now. Thanks for the info!!
bunney4 1 year ago
I refer to mine as "episodes", "movements" or as what the are "Paroxysmal dystonia". Depends on who I'm talking to and what they'll understand.
It's a hard condition to explain to those who don't have it. And also because mine might be caused, by another (as of yet) undxed condition (might be nerve damage), it confuses people.
ElaineCA58 1 year ago
You look a lot like me, which is somewhat comforting to know. Is it confined to just your arms? I've had a condition since I was 16, but all seizers were brief. When I started working in a restaurant, they got worse over time, lasting for 5 hrs and 20 mins once. My arms, legs, and neck all jerk and flail though, sometimes repetitive, and sometimes flowing through my whole body. Imagine doing nothing but that for 5 hours. When it lessens I look as shown in the video.
ColonelMarksman 1 year ago
I feel for you. Only a person who suffers such conditions can ever realize the effect is has on your life. Are yours seizures? I have a movement disorder. I am conscious all the time and am aware of what's going on. It's worse with fatigue and exertion. The only time it went beyond my arms was when I was wrongly put on seizure meds. I had side effects. Now with no seizure meds, it's mostly my right arm. I go to physio therapy which helps some. But physical activity makes it worse. Catch 22.
ElaineCA58 1 year ago
They aren't true "seizures" in the common sense. I think they're referred to as "episodes" or something like that.
ColonelMarksman 1 year ago
I have come to realize the lack of care I received by the medical profession. This is PAROXYSMAL DYSTONIA, with side effects from meds. I hope it helps someone else to know this. It is a movement disorder, brought on by fatigue and exertion. I have come to realize that the seizure med I was on Valproic Acid, (I don't have "seizures")made the movement worse and inconsistent. After being off that med for some time, the movements are now consistent. Physio therapy helps some.
ElaineCA58 1 year ago
PAROXYSMAL DYSTONIA - in my case, might be caused by nerve damage. It's all still a 'MYSTERY ILLNESS" to everyone. The worsening symptoms were caused by being put on seizure meds, when I didn't have seizures. It took me a while to realize this, because of the on/off nature of paroxysmal dystonia. For a time I actually thought the seizure meds helped me, when they were actually making it worse. It's been a confusing time.
ElaineCA58 1 year ago
can anyone message me more bout this?thanks!
AnimeOtaku2010 1 year ago
I had these when I was on Sinequan, Lithium and Prozac. I told the dr I was jerking involutarily and almost dropping things - he had no clue what I was talking about; I had to do my own researach. I will never, ever go back on those things.
YouKidsNever 2 years ago
I have been going to physical therapy for 4 months now. My condition progressed to the point of being in a wheel chair. My physical therapist is convinced that I have NERVE DAMAGE, which is causing DYSTONIA. I am waiting for further testing at a SPASTICITY CLINIC.
The "psychogenic" suggestion by a Neurologist, has been dismissed. If anyone else is suffering such symptoms, I STRONGLY encourage you ....do not accept a "psychogenic" dx.
ElaineCA58
debraelaine58 2 years ago
this looks just like what my husband does in his sleep. he has McCardle's syndrome. Have you ever been tested for that?
patchsheba 2 years ago
HI
No I haven't been tested for that. I'll look it up.
I've been told that I have dystonia and myoclonic jerks. But have been told it's "psychogenic"...which is a dx, many of us with these conditions have to battle. I don't have movements 24 hours a day. I get them from fatigue or activity. Which in my opinion is
PAROXYSMAL DYSTONIA....but Neuros can't be bothered to put any effort into a dx. So I go without treatment. I go for physical therapy and they don't know what to do about it.
debraelaine58 2 years ago
(I think I know you from Wego :P) anyway I have hemi dystonia with myoclonus in my shoulders and upper torso. My Myoclonus mostly occurs at rest but I had one episode while driving that scared me silly. I have been trying to find a clear video of it to show friends and fam... For a while, I kept reading about it and asked myself if my jerks were myoclonic... because i didnt know what it looked like. Now i can say.. yep- thats me.. Thanks for posting this!!
dystoniaSuX 2 years ago
Hi Sue,
YES u do know me! This video is of my original movement episode. Fatigue causes my episodes. This was around 6 pm...after I'd tried to do housework and cooking meals.
I have posted a 2nd video, which is worse. But in that video...I am on seizure meds which caused severe fatigue. I believe the seizure meds made it worse.
Off the seizure meds, I'm pretty much back to having episodes like this, that hasn't changed in quite some time. I am not on any other meds which would cause this.
ElaineCA58 2 years ago
Sue - I don't drive anymore. The exertion of driving is too much and more than 50% of the time brought on an episode. Because I am more educated about myoclonus and dystonia....I can now watch this video and pick those particular movements out.
ElaineCA58 2 years ago
theres a medication called amantadine, that they use in severe cases, its called symmetryl or amantadine. its supposed to help in the cases of dystonia that don't go away. or if you're taking neuroleptics, try stop taking them, or switching to clozaril.
blc341 2 years ago
.I still have no dx.Over this past year I've had 3 changes in the pattern of movements. This video and the second video I've posted, And 3rd progression we haven't been able to catch on video.
Seems more dystnonic. It's my belief that I have PAROXYSMAL/DYSKINESIAS DYSTONIA..(SP?it's late at night as i Post this - lol)
The reason I believe this is because I have periods of no movement. I will attend a local support group soon and get more hands on info.Thanks to all that responded.
debraelaine58 2 years ago
blc341 - I am not currently on any meds that would cause this. My episodes are not constant and I have no idea when they will come, so medication is likely not an option.
I just had a medical procedure that caused fatigue and it brought on an episode. That Dr (not a Neuro) said he'd seen this before and that it was a partial seizures. It's SO FRUSTRATING!! I have just entered my 2nd year of this. Now use a wheel chair to leave the house, because of the fatigue.
ElaineCA58 2 years ago
I should add, that I have severe fatigue and I find that any amount of exertion will bring on an episode. Lately I've been having more DYSTONIA than anything. Dystonia is quite painful as it twists your body into awkward positions...as if being pulled by an invisible person.
ElaineCA58 2 years ago
Can some one tell me if this is curable??
segatman 2 years ago
I've had this for almost 1 year. I belong to several Yahoo support groups. One for dystonia and another for tremor. I personally don't know anyone who has been cured. I know that if a Neurologist can dx your condition, there is treatment that might help. Myself...I have no dx as my Neuro said I am hard to dx. I also have some other problems which are making it difficult. Such as parathyroid. Possible Wilson's Disease. Excellent site to visit WEMOVE.
ElaineCA58 2 years ago
Thanks a lot....All the best to you. You are very brave.
segatman 2 years ago
segatman, to my knowledge....it's not curable.
ElaineCA58 2 years ago
it get these too, but only when im sitting in my chair falling sleep or if im daydreaming or relaxing in the morning. It feels like a jolt through all my body. I believe its one of the side effects of my wellbutrin Im taking.
CreedChrist 2 years ago
HI CreedChrist,
I am on Wellbutrin, but in my case I know it's not the case as I have gone off for long periods of time and it never made any difference for me. Though it may be the Wellbutrin for you. Yours sounds like myocolonus. Theres an excellent site...WEMOVE that you might want to visit.
ElaineCA58 2 years ago
yea when I loved my wellbutrin dose they started to go away. I think it has to do with the norepinephrine that the wellbutrin increases in the body. Causes the adrenal glands to be more active. It only happens when I fall alsleep sitting upright on the desk. Never happens when Im in bed. 2 days ago I had this almost uncontrolable urge to keep stretching.
CreedChrist 2 years ago
I have posted a second video which shows the progression of my condition. The neurologist says it is not a "text book case", may be a "rare disorder" and might take some time to diagnose.
ElaineCA58 2 years ago
I have Juvenile Myoclonic Epilepsy and I take Keppra 1000 mg morning and eavning.
I hope that you get better
Oslo13 2 years ago
Wilderone...
I have posted an updated video dated March 2009. They are much worse now. Are u still trying to get a dx?
ElaineCA58 3 years ago
I get these but harder. Legs and arms fail. Electrical jolt that's painful for a sec. No seizures on 3 day eeg. sometimes 30-40x a day. Then none for a while.
wildredone 3 years ago
Led - Thanks very much for taking the time to respond. It really does help to know I'm not alone and that might be help for me. I'm feeling really depressed, but you are all giving me hope to push the Dr further to find a dx.
Elaine
ElaineCA58 3 years ago
I have this as well. It is caused by chronic lyme disease for me.
LedByTheLamb 3 years ago
I've had an eeg and an mri scan.
I have this kind of epilepsy it's really hard :|
It's so brave putting this on here.
i admire you.
JadeLouiseDurn 3 years ago
Thanks for the nice compliment. : )
Even though I am meds, the "tremors" /"seizures are worse than in this video. They are less frequent, but worse.
I begin to feel better so try to do a few things in a few days. After a few days the "tremors begin and really hurt my muscles because I can't stop them.
At least I've begun to figure out a pattern.
I hope we can all help each other.
ElaineCA58 3 years ago
Hi Leigh,
Thanks for your comments. My EEG and MRI were normal. I've been doing a lot of research and found that even normal results could possibly be wrong? Have you heard of that or had that experience?
I am on Valproic Acid which helps, but doesn't keep me on a regular pattern. I alternate between good and bad weeks. I'm so tired all the time.
My GP said this will be a long process to dx.
ElaineCA58 3 years ago
Yes I have these too. My epilepsy, well finally working out all the symptoms I have experienced, come down to 3 different seizures so far, Tonic clonic, Myclonic and Simple partial. I don't know if you have any other seizure types, but I know when you are tired or coming out of sleep or going into sleep or overtired this seizure type occurs, it occurs in one muscle group at a time and can affect the thigh movements a lot.
leigh1976 3 years ago