Intention tremor

[Marky90]

Ahhh... The world of symptoms nobody seems to have to have. But me, and maybe you?

Besides my ME, I have this weird tremor thing going on. Preceding my ME, I got this intense tremor in my whole body if I e.g. did situps and elevated my upper body slightly. I found it embarrassing, but didn't mind, as it didn't affect my function as this other shitfest called ME proved to do.

Now, from time to time, I will have periods when its quite profound when walking down stairs. My knees will shake when planting my feet. Also if i place the ball of my feet on the ground, and move it back and forth, it`s jerky. I know some people with MS experience this, and the hypophesis is that its due to lesions in the cerebellum. Or the like. I also read somewhere that alcohol (and cannabis) has been (with controversy) used with positive effects, probably due to slowing down the nervous system or something. This is also my experience, as i get huge symptom relief from it. Unfortunately obviously, not a drug u can use very often.

I visited a neurologist last week, not related to this, just for my ME. Being sent around like a pinball in the system as usual^^ All those standard tests were fine. Im scheduled for a MR of my brain and spine, so it would be crazy if anything showed up. If i get MS after rituximab treatment, that would be so ironic that i would laugh my pale Norwegian ass off.

Don`t really have a concrete question, but wondered if anyone has had similar experiences, as I`m unsure if this is a issue to "my" ME, or something unrelated. I`m a bit perplexed to why this showed up again, but a bit hopeful that it could be a clue to.. something.

Edit: I realized that i made a related post last fall on having "shaky legs" when they`re elevated, thanks to the contributors there.

Thanks for reading
Marky

 

[JaimeS]

Intention tremor seems to be a 'thing' in ME. Not one I generally experience, but I have seen / heard of in other patients. Dopamine imbalance?

Maybe this will help.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3907068/

And here, but skip down to the types:

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Tremor-Fact-Sheet

 

[Marky90]

Thanks Jaime! Had a quick read.
I dont think its dopapine related, as ive been through the tests and all. I actually realized that the tremor occurs in the leg/knee carrying the weight when walking down the stairs. So i guess thats not intention tremor per se. Dont know what the heck it it is, maybe just some weird ME-thing as u pointed out.

 

[halcyon]

Yeah my legs shake when going down the stairs. I assumed it's just the muscle weakness part of the disease. I'm sure most people would assume it's deconditioning, but it varies to the point where some days it doesn't even happen and other days I feel like my legs are going to give out.

 

[Tilney]

And I thought I was the only one !

It started about 4+ years ago & gets worse after exercise - i.e. carrying a shopping bag for a few minutes & then trying to eat or drink is a nightmare.

Don't know if it will help you or anyone else but I have found that Diet Pepsi caffeine free helps - in the UK it contains Phenylalanine.
I was asked by a member of the medical profession if any of the other diet drinks have the same effect & yes they do provided they contain Phenylalanine.


With me I do think it is dopamine related

 

[Marky90]

Thanks for the replies guys, waking up today I didnt really have it, so i`d presume it`s related to PEM. As yesterday it was pronounced at the end of the day

 

[anciendaze]

I assume you are well aware that intention tremor is part of Charcot's triad for diagnosing MS, along with nystagmus and scanning speech. Whatever other things you may have read about Charcot, he was a competent neurologist who ultimately traced MS to demyelination found at autopsy, removing it from the category of purely functional mental illness. He was the one who created MS as a diagnostic category.

This does not mean you have MS. Modern diagnosis requires evidence of demyelination from those MRIs mentioned, not just a triad of symptoms. If you had that damage, you would not have the intermittent intention tremor you describe. It is very hard to reverse such damage, if possible at all.

Now, the problems with MS diagnosis. There are many patients who have a single episode with a cluster of symptoms that would normally meet diagnostic thresholds for MS, and medical experts are still divided over which have actual MS. This can even include demyelination of the optic nerve producing optic neuritis and causing a change in color of the fundus visible on examination. There may even be scattered damage seen on an MRI. From a case I know, it is even possible for this limited demyelination to reverse -- independent of treatment.

I, for one, find this state of the art highly unsatisfactory. Once it sets in solidly, MS is pretty near incurable with current interventions. We need the ability to detect or predict the disease while it is still possible to make interventions which will stop it from progressing to disabling or lethal. Our present ignorance means we can only tell if someone has the real disease in those cases where nothing works very well.

 

[jaybee00]

Hi Marky,

Did the tremor get better, get worse, or no change after the rituximab?

Thanks!

 

[Strawberry]

This is my longest lasting symptom! I've had shaky muscles after exercise/muscle use for decades. I also heard about cannabis helping, so got a medical prescription, but it actually magnifies it by 10 times for me. I had to crawl down stairs while using it. It definitely is worse while having bad PEM, but I have never thought of it as part of PEM as I have had it for so many years. I even got to the point that I had to give up riding my Seadoo, as I could barely crawl out of the lake to the dock to collapse.

And following anciendaze's post, I don't have MS, but I DO have demyelation.

I have no idea what causes it.

 

[skwag]

Thanks @Marky90 for starting the thread. I had no idea the name intention tremor existed.

I have at least three examples that might be considered an intention tremor.

1. Foot or lower leg: This is the one you describe. If I'm sitting in a chair with my feet on the ground, I can slowly raise my heel so that the ball of my foot is supporting my leg. From this position if I try to smoothly lower my heel back to the ground, the tremor begins. It results in my leg bouncing up and down a few inches uncontrollably.
2. Index and middle finger: If I make a peace sign and then attempt to slowly bring my index and middle fingers together, the tremor begins. The index finger swings back and forth an inch or more.
3. Abdomen: When doing sit ups, I can smoothly go from the laying to the sit up position, but when I try to smoothly go back down, the abdominal tremor starts. ( This is not a result of fatigue or lack of strength )

In all three examples, it is as if the muscle won't release from a contracted state smoothly. And once the tremor starts it seems to be self-sustaining if you try to hold the position.

Is this what you are talking about? Is this an intention tremor?

The examples I described are actually what I was experiencing a couple years ago. It was always present so not a result of PEM ( which I don't think I have anyway ). Over the last year it has decreased dramatically, but it still slightly present.

 

[Marky90]

Hi Marky,

Did the tremor get better, get worse, or no change after the rituximab?

Thanks!

No impact on this

Thanks @Marky90 for starting the thread. I had no idea the name intention tremor existed.

I have at least three examples that might be considered an intention tremor.

1. Foot or lower leg: This is the one you describe. If I'm sitting in a chair with my feet on the ground, I can slowly raise my heel so that the ball of my foot is supporting my leg. From this position if I try to smoothly lower my heel back to the ground, the tremor begins. It results in my leg bouncing up and down a few inches uncontrollably.
2. Index and middle finger: If I make a piece sign and then attempt to slowly bring my index and middle fingers together, the tremor begins. The index finger swings back and forth an inch or more.
3. Abdomen: When doing sit ups, I can smoothly go from the laying to the sit up position, but when I try to smoothly go back down, the abdominal tremor starts. ( This is not a result of fatigue or lack of strength )

In all three examples, it is as if the muscle won't release from a contracted state smoothly. And once the tremor starts it seems to be self-sustaining if you try to hold the position.

Is this what you are talking about? Is this an intention tremor?

The examples I described are actually what I was experiencing a couple years ago. It was always present so not a result of PEM ( which I don't think I have anyway ). Over the last year it has decreased dramatically, but it still slightly present.

Neither did i, haha. But yeah, what youre describing is exactly it! So weird.

 

[Woolie]

I dont think its dopapine related, as ive been through the tests and all.

Dopamine-related illnesses, like Parkinson's, are generally associated with resting tremor. Paradoxically, the tremor seems to go away when the person initiates action.

As you said, intention tremor has been linked to cerebellar damage. I personally doubt though, that there's anything structurally wrong with your cerebellum. So many systems have to be working in tight synchronicity to adjust an action to the situation (step size, etc), there are lots of places where this could break down.

That doesn't get us closer to knowing what's causing it for you, though, @Marky90.

 

[Maya24]

My neurologist prescribed a beta blocker for tremors. He said my MRI was fine. (This was a couple of years ago, before CFS diagnosis)
MIne is also intentional tremor (or essential tremor as it's called here). I only use betablockers when it gets ridiculous
- like trying to take a bite
- not being able to click with a mouse
- trying to open a jar
- anything which requires precision
Some days it vibrates through your entire body. It gets worse with fatigue and hormones.
But life goes on.

 

[Strawberry]

My best friend got the pleasure of witnessing this last weekend. It freaked her out as I looked as if I had severe uncontrollable parkinsons disease from lifting up a water bottle. It was the first time I realized this was due to overdoing it/crash. It took 3 hours of laying down to get it to stop, and then I was still very weak the rest of the day.

 

[MTpockets]

My neurologist prescribed a beta blocker for tremors. He said my MRI was fine. (This was a couple of years ago, before CFS diagnosis)
MIne is also intentional tremor (or essential tremor as it's called here). I only use betablockers when it gets ridiculous
- like trying to take a bite
- not being able to click with a mouse
- trying to open a jar
- anything which requires precision
Some days it vibrates through your entire body. It gets worse with fatigue and hormones.
But life goes on.

How do the beta blockers help the tremor? I mean what is the science behind it? Is it because it blocks adrenaline?

 

[Starsister]

I've had shaking in my hands since I was in my early 20s but has gotten much worse over the years. It runs in my family, in the women, and they called it a familial tremor and essential tremor. Happens worse when I am tired or stressed.

Years ago I asked my dr for something fir it and was prescribed propanalol, which seemed to help a lot till last few years. I'm so used to it that I don't think about it but it worries people who see me with it. Happened to have it extremely bad one day when I was seeing neurologist for extreme vertigo....he got concerned and quickly quadrupled my dose....of course ignoring the reason I went in trying to figure out autoimmune, CFS of whatever. He felt better having something he could write a script for, I ignored it increasing at as he failed to take I to account that I have general low BP already. In addition to POTS, and prop. Lowers BP...it is a beta blocker.

Not going back to that doc! Still no answers on the vertigo. I can live with the shaking...just embarracing when I'm in public, and impractical eating in public...I have to hold my arm still to get food to mouth. But it doesn't cause concern for me like driving with vertigo attacks.

 

[bread.]

Anyone figured this out? Developed intention tremor in my hands/arms over time, I guess it some damage in the cerebellum, when I was still able to stand up I was also unable to stand on my heels, everything started shaking, that is also indicative of pathology in cerebellum...

I will never forget what my mofo neurologist told me when he saw this: "Well, that is neither fish nor meat" which is a German/Austrian saying which should indicate to me that I make this voluntarily. I hope the lightning hits him when he is on the shithouse (another saying in Austria).

 

[TinaYesen]

Abdomen: When doing sit ups, I can smoothly go from the laying to the sit up position, but when I try to smoothly go back down, the abdominal tremor starts. ( This is not a result of fatigue or lack of strength )

I have this type of muscle jerkiness and I also have shaking legs going down stairs especially in the morning.

I also have hand tremors that start if I stand too long or have any minimal increase in exertion or adrenaline-like response or tough mental exertion (e.g. they act up after a 15 minute work call and acted up after witnessing a car accident). If I try to bring my pointer finger to my thumb, my fingers/hands shake.

I have a theory this is directly related to POTS and blood flow for at least a portion of pwME.

Here's why:
Cleveland Clinic notes 'Tremor/shakiness, especially after adrenaline surges' as effect of POTS (https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots).

Furthermore, I had a tilt exam to induce my POTS, and at 12 minutes, when my breaths per minute and pulse drastically increased, in that EXACT moment so did my hand tremors come on.

This explains why the tremors are worse after showering (standing >15 minutes). POTS also explains why they are worse after adrenaline surges.

POTS could also explain why the leg shakiness is worse in the morning going down stairs (after having been horizontal in bed), although I believe the general muscle weakness is also largely at play in the case of leg shakiness and jerky abdominal exercises. I can talk about that in another chain.

If you don't know whether you have POTS it's a simple test. Beware not all hospitals are the same. The first hospital indicated they were testing me for orthostatic dysfunction and did not catch my POTS b/c I believe they performed the test incorrectly for a pwME. The second hospital did.

 

[TinaYesen]

Sorry, just to add, propranolol is also a treatment for POTS, so if it helps your tremors, again, this could be because it's helping the source POTS.