Hello Neurotalk members,

I just ran across some information that makes me feel very confused about what might be going on with me neurologically, and I hope people here who have more experience could maybe help. This is a little long, but if you have the time I'd appreciate it!

When I am very relaxed (or sometimes just randomly, but that is rare), my arms and hands will involuntarily move. This has been going on for about 8 years, and I have previously just ignored it. I can stop it by moving voluntarily again. It was sort of disturbing at first, but since it's not particularly invasive, I haven't tried to figure out what might be causing it. I've also experienced my hands doing things when I'm focused on something else, such as picking up objects, and then I have no idea where I got the objects or when (this is also very rare, happening maybe twice in the past three years).

Today the involuntary movement happened when I wasn't relaxed but already moving, and that freaked me out. I decided to research on the internet about what might cause involuntary movements, and found out about "dyskinesias" and in particular the movements I experience look most similar to dystonia movements.

As I read further about dyskinesias, I found that tics were also considered one of these, and were also associated with obsessive compulsive disorder and schizophrenia in being disorders centered on basal ganglia structure of the brain. I also read that dopamine was the primary neurotransmitter associated with the function of the basal ganglia.

My issue with this is that I was diagnosed with Obsessive Compulsive disorder in 1996 when I was 11 years old (I believe this diagnosis was over-reaching because while I did have some OCD tendencies, my behavior issues were largely due to family problems and could have been corrected with proper counseling). I was put on dopamine reuptake inhibitors. When I was 14 I was still on them, and I began to have symptoms of overdose. This included tremors, eye-twitching, hallucinations, delusions and paranoia similar to schizophrenia.

This is also when the involuntary movements started. When I was finally taken off the drugs at 15 (against doctors orders...) my behavior became normal and the tremors stopped. The eye-twitching tic stayed for another year or so, and then finally subsided. I just realized that the only thing that hasn't left is the involuntary dystonia-like movements when I relax... and perhaps those movements weren't a coincidence but a result of the drugs; the result of some modification to the basal ganglia or similar.

I'm not sure who to talk to about this. I am angry about what happened already. I'm afraid that as I grow older this might become worse, after today, when the movements started when I was active. Is there any precedent for this that anyone has heard of? Should I go in for a neurological exam or just continue to ignore it? Is it possible there isn't a connection at all, and this is normal?

Thanks for reading,
Bri

I just realized - this isn't the first time I moved involuntarily while I was already active. A couple months ago I crashed a maintenance cart into a pole at work because my leg suddenly jerked and hit the gas before I could put the cart into reverse, and it took about 30 seconds to regain control of my leg after I hit the pole. I was reduced to yelling at it before it would move again. I had to come up with an excuse to my boss for how I could crash a cart that way without it being on purpose... I don't think "my leg refused to obey me" would fly. At first I was terrified that something was really wrong with me, but then decided since I didn't get enough sleep the night before, that must have been the reason.

It sounds to me like tardive dyskinesia. You should look it up and see what you think. TD is caused by anti-psychotic drugs and is sometimes permanent, but there are treatments for it. I would probably consider treatment, considering that it could happen at any time, and you could be more seriously injured. From what I understand, one of the key differences between tics and dystonic movements is that tics come with a compulsive urge to make the movements and a sense of relief after making them; dystonic movements are completely involuntary and random.

I should add dopamine is only one neurotransmitter associated with dystonia. Many dystonias do not respond to dopamine.

I've never met another adult who had similar symptoms though not until adulthood!

I have involuntary movements too my hands flex in an 'athetoid-type' style but I wasn't born with Athetoid CP and none of my neurological problems started until my early thirties.

I had difficulty walking my back and legs were really stiff at first we just thought cos it was winter (feb 2003) I could barely walk and struggled to keep my balance I was admitted to Neuro ward and given emergency MRI to look for MS.

I was told my symptoms were Ataxia but it was too early to say if it was 'cerebellar ataxia' but they said maybe and possibly due to Chronic Hypothyroidism (which I was born with). I had no involuntary movements at that time.

After 40 my arms started becoming twitchy and arms and legs would lock in position for a few seconds I had another scan they said no degeneration of cerebellum but something was going off in my Basal Ganglia and I had high electrical activity in my brain and was given the test where they stick the electrodes on you. I also had that as a child as I had childhood epilepsy which I was told can also be caused by an 'excess of electrical activity in the brain'.

I did wonder if there was a connection between them. I asked if maybe misdiagnosed with Dystonia and my neuro said they thought I had both together as I definitely had Ataxia first on its own for the first 6-7years.

As my cerebellum has shown no shrinking or degeneration they can't call it Cerebellar Ataxia with Dystonia so have classed it as Ataxic-Dystonic Quadriplegia (both present together in all 4 limbs) which I have never heard of.

I don't pick things up unintentionally but I drop or let go of things unintentionally which is why I can no longer walk with crutches as I can't keep hold of the handles.

My hands constantly flex at rest and arms and legs stiffen and relax periodically on their own, if I'm focused on something else like typing this or preparing dinner the stiffening stops whilst I focus on been as still as I can to chop veg or hit the right letter etc. My arms still move in a quite jerky motion though rather than one smooth motion.

sometimes i find myself sticking my tongue out or opening and closing jaw muscles and I hadn't consciously done it, doesn't bother me much at home as live on own and mainly housebound but I'm always really self conscious if have to be sat in waiting room or something where people tend to look if they see you twitch or move!

Kati

Hi Kati, me again.

You didn't have sudden onset of symptoms after an influenza shot or some type of medication?

You didn't have Rheumatic Fever as a child did you?

I had a friend many years ago who had something called Guillain-Barre syndrome after having an injection for the yearly 'flu.

Just reading your message and wondering what was going on with your health just prior to when your symptoms started.

take care,
Lara

Hi Lara

No I never had that.

Just born with thyroid not working and childhood epilepsy till age 7.

Had chicken pox (6yrs) and German Measles at about 10, thats it.

Even when lost some hearing at 16 I was still healthy otherwise, could skate, walk, run etc throughout childhood, nothing neurological/mobility wise till early 30's.

Kati

Sorry, was editing my message as you posted. Didn't realize you were there online.

Heading to midnight here Kati. Gotta get to bed.

Just was trying to think about something that may have triggered your symptoms.

Born with thyroid not working? Sounds like a red flag to me. You take medication all your life for that?

yes, its a long story.. lol!

I can't remember past about 7yr old cos of the epilepsy so only know what my mum told me.

Apparently she had Toxaemia (blood poisoning) when she was pregnant with me as she was Rhesus Negative blood and my dad was O+

I was born and was blue for a short while then also had jaundice, they did not know my thyroid had not developed properly in womb maybe as a result of the blood poisoning? I was born in 1969 maybe they didnt do the heel prick test on newborns then for thyroid but I was 23 months old before they found it wasn't working.

I think they may have thought it was brain damage and the thyroid tests were the last results. At 23 months old I could not sit unsupported, crawl, walk or speak, apparently didn't even do 'baby babbling'.

Once they found it I was on thyroxine since 23 months old and I had intensive physio and speech therapy in a child development unit attached to a local hospital.

I'm not sure how the epilepsy started but apparently I had it from 4-7yrs old, which affect my learning prob forgot what I had been taught after a seizure, I'm not sure. I remember been told I had to repeat a year and but then jumped back up to class I started with and stayed in mainstream education.

My deafness happened after I was moved from childrens doctor to adult one at 16 and the new one didn't agree with my previous doctor always kept my thyroid high so as not to stunt growth. I started after hearing difficulties a few months after my dose had been lowered.

They say they can't know for sure that my difficulties are a result of my thyroid but each illness has come after my thyroxine was reduced and my most healthiest time was on the highest dose.

Since I started a group for ataxia I met a brother and sister who also both have the combination of all three - ataxia, hypothyroidism and deafness. But its quite rare and never heard of anyone else with all three though we are all affected with different degrees of each.

Whilst doing research I have found Hypothyroidism listed as causes of Ataxia, Dystonia and deafness.

Kati

Hi Bri,

Doesn't sound like Tardive Dyskenesia or Dystonia to me (I have medication induced Dyskenesia and Dystonia) and I don't believe the meds you were on have any documented association with these disorders. Also, mental disorders don't "cause" any sort of movement disorders - only the medications taken for the mental disorders cause the problems - mainly neuroleptic drugs.

It's very interesting that you mention that you "picked" up something without realizing it. That is peculiar. I would maybe think about seeing a Neuro/Psych. Sounds to me like Tourettes syndrome type behaviors - but I am far, far away from being a doc.

Best thing I've done for my movement disorders (beings there is no cure and really no treatment) - is just to accept them, be a little bit funky and clumsy, be happy and go through life. Good luck. : )

God Bless,
Sue