Fine Motor Skills / Ataxia / Dysautonomia Connection ?

[Dizzysillyak]

Anyone else have ataxia and problems with fine motor skills ? I read that both of these activities

are controlled in the cerebellum.

My ataxia is gone but writing or chopping veggies makes my brain feel like it's slogging thru mud.

It's the same feeling I get when I've been up too long and am forced to read something. Like Reading

labels at the store ..

I think it may actually be getting better but not by much .. I'm not sure if laying down while doing these would help or not. Maybe standing on my head would tho ..

For years after coming down with me/cfs/oi I had to take diamox from headaches.

[Elfie]

I wasn't being taken seriously about persistent dizziness and "issues" when standing (and even sitting, or lysing down depending on circumstances). However, on of the things that I was able to drive home seems exactly like what you are describing . . .

I was constantly cutting and burning myself while trying to do food prep/cooking. Chopping veggies was a nightmare.

After years of doing my own eyebrows, I find it almost impossible to pluck them (fine motor skills, spacial perception) unless I haven't done any standing or are otherwise having a "good day."

Taking notes can be difficult, or writing--- I have to repeat things to myself like a kid because it feels like I am writing so slowly.

Reading when standing is not good for me--- then again, I forgot my birthday and tried to use a screen as a credit card machine after waiting in line for the pharmacy the other day.

[Dizzysillyak]

Sadly I can relate to not being able to doing my eyebrows. I keep my nails super short

because I cut them with clippers by feel .. . It's like my brain / eye connection just isn't there sometimes.

I crack up when someone tells me that I need to play scrabble, etc to keep my brain working. They

have no idea how hard my brain is working just to take care of myself ..

I started the dr wahls diet about a month ago and I'm hoping it will help. Food makes a big difference

in my symptoms so I'm hoping it does. I'm being cautiously optomistic .. I'm not sure what else I should do.

I was hoping someone would know if dysautonomia can be related to cerebellum damage .. I saw

dizziness listed but not oh or pots.

Tc .. D

[HopeSprings]

Yes, I feel my fine motor skills are affected - because of sensory issues. I'm constantly dropping things because I don't totally feel my hands. I can also relate to the eye/brain connection problem.

[kmichaelson]

Yes! I've been wanting to ask this same question! I've been kind of concerned because even though I've had these problems for about a year, they've gotten a lot worse recently. Anything that involves moving my fingers with any sort of precision has gotten very difficult for me. I asked my cardio dr. if this could be due to dysautonomia and lack of blood flow, and he said he thought it could be. Still, I worry that it's something more to do with my nervous system. I had some nerve tests this past summer, and some of my nerves were "slow" (whatever that means) but the test was inconclusive otherwise (sigh). It would just be nice to know what's going on with my body for once and know what to do to treat it.

[Dizzysillyak]

Sorry to hear you're doing this too.

I forgot to ask .. Did your dysautonomia start with an illness, like a virus or bacteria ?

I just wonder if something damaged our brains .. I "think" that could be why I react neurologically

to gluten. This all started with a bug .. I "think" it caused encephalitis.

I drop things a lot too. I quit using any kind of straight container for my drinks because my hand might let go of it.

I hadn't thought about having sensory issues. Thanks, I'll google that.

Tc .. D

[ramakentesh]

Ofcourse, since the autonomic system and its function is governed by the brain stem it is more than possible there is a cerebral problem. Many CFS patients in particular seem to have excessive cerebral excitation. There is work in this area right now that is showing some interesting findings. Abnormal proteins in CNS fluid, NMDA receptor abnormalities, etc.

[ramakentesh]

Alternatively there could be other reasons for subjective symptoms of ataxia - acetylcholine receptor antibodies have been reported in POTS and M.gravis - perhaps they play a role?

[HopeSprings]

I feel something is wrong with my brain too. And I'm not sure I buy the -less blood flow to the brain- explanation. It might be part of the problem, but I think there's more to it.

Many CFS patients in particular seem to have excessive cerebral excitation. There is work in this area right now that is showing some interesting findings. Abnormal proteins in CNS fluid

Wish they would report specifically what abnormalities they found in CFS patients' spinal fluid. All they said was they found differences between Lyme, CFS and controls ... well WHAT were the differences? Do you know Rama?

[ramakentesh]

There is some articles on pheonix rising abiout that.

[HopeSprings]

Ok, I don't recall seeing any specifics, but will take a look.

[Katybug]

Yes, writing and cutting up food are challenges for me now (and doing my eye makeup). I also tried to trim my mom's hair (I was sitting on a stool) and that was difficult too. My hands shake with all three activities. Also, during writing, I will sometimes have to stop and really make a very conscious, concerted effort to make my hand write what my brain is thinking (like half way through signing my name, my hand will not be able to keep going and its like I have to literally use all my will power to finish my name) and I also have started to experience nystagmus (involuntary back and forth eye movements) when I write more than 3-4 words. I also have issues occassionally with things falling out of my grip...my hand doesn't open up but I will drop because I am not holding the item tight enough (paper, coffee mug). It feels like a fine motor skill issue when it happens. The neuros have tested me extensively and can't find anything neuro wrong with me (other than POTS that is.)

[ramakentesh]

the doctor involved has a surname that is long and starts with B. Sorry I cant recall it and my internet is not working well so I cant search it for you.

its quite possible dysautonomia is a reflection of cerebral abnormalities. There is as yet very little research on the topic other than increased cerebral lactate levels in POTS/CFS (pateints with both CFS and POTS). Increased lactate is a marker for reduced mitocondrial metabolism perhaps due to abnormal antioxidant activity or cerebral hypoxia (from abnormal cerebral blood flow regulation as found in POTS).

Something Ive often pondered is why CFS / POTS patients get CNS (central nervous system) reactions and symptoms to medications that are not supposed to be able to cross the blood brain barrier? Does something in the POTS paradigm - particularly in those with more sympathoexcitation comprimise the blood brain barrier? i was suprised to find out that docs have already thought of this and may be proceeding in that direction.

[HopeSprings]

Katie - yes, you describe it perfectly.

Rama- feels like there is no barrier between blood and brain. I can't take anything without immediately feeling it in my head.

[issie]

its quite possible dysautonomia is a reflection of cerebral abnormalities. There is as yet very little research on the topic other than increased cerebral lactate levels in POTS/CFS (pateints with both CFS and POTS). Increased lactate is a marker for reduced mitocondrial metabolism perhaps due to abnormal antioxidant activity or cerebral hypoxia (from abnormal cerebral blood flow regulation as found in POTS).

Something Ive often pondered is why CFS / POTS patients get CNS (central nervous system) reactions and symptoms to medications that are not supposed to be able to cross the blood brain barrier? Does something in the POTS paradigm - particularly in those with more sympathoexcitation comprimise the blood brain barrier? i was suprised to find out that docs have already thought of this and may be proceeding in that direction.

Interesting, I've just recently started taking something to help my mitochondrial function and it is supposed to help neurotransmission. It along with two other new things (all are alternative supplements) and I'm starting to feel wonderful. I want to test it out a little more - before I tell what it is. I have more energy and feel happy and like I'm on top of the world. I hope it continues to work this way. Too soon to say.

Yeah, those paradox reactions are horrible. It seems that's my response more than not. Everything seems to affect me emotionally and do the opposite of what it's supposed to do.

Issie

[ramakentesh]

Rama- feels like there is no barrier between blood and brain. I can't take anything without immediately feeling it in my head

Im exactly the same. The reactions have decreased over the years but I get weird migraine aura visuals within 2 minutes of taking midodrine.

[Dizzysillyak]

When I had to take klonopin 24/7 after my two hour seizure last march, it caused my ataxia to return. I couldn't stand

up for a few seconds even. As soon as I came off it, the ataxia was gone. Benadryl does this now

too.

I took klonopin from 1992 -

Feb 2006 for myoclonus. I had ataxia from jan 1990 - sept 2006 so I don't think my ataxia was caused by

Klonopin for all those years. It appears to have been triggered by gluten. Why gluten all the sudden

caused this after 50 years of eating it, is a mystery. Unless a bug damaged my brain.

I'm hopeful this can be reversed. Maybe via nutrients and physical therapy. When I first started walking again, legs

no longer wobbly or heavy, didn't fall over, vusion cleared .. It took awhile for it to become natural.

My legs and brain needed to re-connect .. My legs were out of shape too of course. Before my ataxia majically disappeared in sept 2006, I could usually

walk a few steps "normally", but then my brain got confused and I had to tell each leg to move.

Anyone else here have myoclonus ? It's a type of seizure involving quick jerks. I've seen a type of

myoclonus being blamed for our writing problems, etc. My hand used to jerk really bad when I tried

to write, now I just struggle mentally to control it.

Tc .. D

[Dizzysillyak]

Rama,

I'm leary of looking at what chemicals are off in pots or cfs. Anyone with oh is going

to have a host of unusual chemicals since our blood isn't making it to our upper bodies

when we're upright. No blood or severely restricted blood will stop oxygen, nutrients, red

blood cells, etc from feeding our cells. Our upper organs can't work properly like this. Even holding one's hand up for an extended time

illustrates this.

Tc .. D

[issie]

Forgot to add - put me in with you guys for the ataxia and motor skills. When the doc checked me in walking - it was horrible. I was all over the place - he thought I was faking it. My previous doc had diagnosised me with ataxia and at one point I had to use a cane and/or hold on to someone. I'm better with it now - but, have periods where I'm all over the place. I have tremors in my hands, legs and head - sometimes worse than other times. Stress will really get them to going. I'm sure it has to be connected to the autonomic dysfunction. (First diagnosis was Parkinson's for me. That was wrong.)

One thing that happens with me sometimes is my legs won't pick up. Do any of you with ataxia have that? It's like my feet get glued to the floor. I also can't pick my legs up to get into a car. I have to sit down and physcially with my arms pick my legs up to get in. It's not all the time - just sometimes. Especially, if I've walked allot and am over tired.

Issie

[Dizzysillyak]

Issie,

Sorry to hear that you're going through this. YES . My legs were feeling the same way. I had to

use a motorized cart when I went out because my arms were too weak to hold me while using a cane. If I

tried to walk any distance, like to the back of the grocery store while hanging onto the grocery cart, my legs would forget how

to walk and my right foot would drag.

It took a year after going gfdfsfcf + chemical free for this to resolve. I still get ticked off when I think about

how I struggled and how easy it was to resolve.

Tc .. D

[kmichaelson]

Yes, I have difficulty walking just like you both described!

[issie]

Since I'm TRYING to go glutten and dairy free that has helped. I'm still not perfect with it. But, my neuropathy in my legs/feet/hands has gotten better too. But, don't ask me to walk one foot in front of the other ---please don't pull me over and ask me to do that ---they'd think I was drunk. LOL It's really not good at all. I'm a wobbly, awkward walking mess. It's really frustrating. It's kind-of like walking on a moving boat - all over the place. I love it when I have my good days though - poise and grace. (Or, is that just wishful thinking? )

[Dizzysillyak]

Hi dizzy,

Sorry to hear you're going thru this too. If you haven't already you may want to look at your

diet .. Gluten appears to have been causing this for me. It's called gluten ataxia if you want

to google it. Dr h says that gluten damages the purkinje cells in our brains.

Hi issie,

That's great that you're seeing an improvement. I thought I was dreaming too when this happned

to me ..

You're describing all the symptoms I had .. Good to hear you're trying gf. Fwiw. Imho, It may be

harder to give up gluten if you're still being exposed to it. It can be addictive since it can act as

an opiod.

I'm laying here dreaming about kettle organic potato chips and trying to rationalize why I should

just go buy some so I understand addiction. Lol ..

Tc .. D

[issie]

Yum, I've got some - come on over - we'll share the bag.

Issie

[Dizzysillyak]

Lol ... Not fair ..Trust me, If I lived near you, I'd be there ..

I came back to add that I was eating lots of "gf" foods when I started walking normally.

I'm just trying to be more careful now that I've had 3 stool tests in the last 3 years come back with gluten

antibodies .. I became more interested when I read that antibodies can block nerve fibers.

Tc .. D