Ataxia

Posted by wittmack @wittmack, Tue, Jul 9 11:02am

What does having ataxia do to your life? I have just been diagnosed this year and am interested in hearing others stories of the progression.

Liked by Leonard

@wittmack
Hi there,
As you probably know Ataxia is an inability to properly control your muscles, primarily or at least in my case walking. Sometimes people have more fine motor control issues like picking up an object.
I imagine you have already had an MRI and or CT. Did you have a fMRI (Functional MRI) by chance, it shows blood flow in your brain. Sometimes Ataxia can be caused by a blood clot. If you had any scans what did they show.
Ataxia can manifest itself in various ways. In my case I was walking up a sidewalk to see a friend and I couldn’t get up the step. Then as I tried to walk straight with each step I would turn to the left. I couldn’t get to my friends door or back to my car. I was walking and very awkwardly at that in a big circle always going to the left. I yelled for help and someone got me back to my car and I drove to the hospital where I was admitted. Only my legs were affected.
Here is a link to information on Ataxia from Mayo Clinic,

https://www.mayoclinic.org/diseases-conditions/ataxia/diagnosis-treatment/drc-20355655

Best of luck,
Jake

REPLY

Hi, @wittmack – I applaud your efforts to learn more about your diagnosis of ataxia. Good to see you've connected with @jakedduck1, who has also experienced this.

I'd also like you to meet @lillian32 @peggyella @jmjlove @rubickscube @rldawg @edglenn @sarcomasurvivor, all of whom have mentioned ataxia, to see if they can share about what ataxia has done to their (or a loved one's) life and how it has progressed. I'd also like to tag @hopeful33250, who may have some thoughts for you.

While we await their joining this conversation, I'd also like to share some Mayo Clinic information on ataxia https://www.mayoclinic.org/diseases-conditions/ataxia/symptoms-causes/syc-20355652.

Since your diagnosis, @wittmack, have you seen any progression in your own ataxia or particular impact on your life thus far?

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@wittmack
Hi again,
Did you go to the doctor because of specific symptoms associated with Ataxia? What are your symptoms?
Are you unstable when you walk, difficulties picking up objects, headaches, dizziness?
Jake

REPLY
@jakedduck1

@wittmack
Hi there,
As you probably know Ataxia is an inability to properly control your muscles, primarily or at least in my case walking. Sometimes people have more fine motor control issues like picking up an object.
I imagine you have already had an MRI and or CT. Did you have a fMRI (Functional MRI) by chance, it shows blood flow in your brain. Sometimes Ataxia can be caused by a blood clot. If you had any scans what did they show.
Ataxia can manifest itself in various ways. In my case I was walking up a sidewalk to see a friend and I couldn’t get up the step. Then as I tried to walk straight with each step I would turn to the left. I couldn’t get to my friends door or back to my car. I was walking and very awkwardly at that in a big circle always going to the left. I yelled for help and someone got me back to my car and I drove to the hospital where I was admitted. Only my legs were affected.
Here is a link to information on Ataxia from Mayo Clinic,

https://www.mayoclinic.org/diseases-conditions/ataxia/diagnosis-treatment/drc-20355655

Best of luck,
Jake

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@jakeduck1
…..I too have ataxia but it is after a large cerebellar stroke. It's like my left side has a mind of its own. My strength is good, but control poor. I assume your ataxia was not brought on by a stroke. I have freak sympathy. My left hand doesn't know what my right hand is doing. I know how frustrating that can be. Much sympathy. Do you find your body acting up when you begin a particular task, but while still, no one would even know? When I try to hold a drink, my hand goes all stupid, spilling drink all over. But….unless something is in my hand, the hand stays relatively still. Though I do find the arm, shoulder blade and leg likes to do major ongoing twitching. Do you have that? Ataxia is not typical after a stroke, but I can see how a clot may bring it on. Was that your case? Sounds like it hit you out of the blue. Sorry to hear that. Do they have you in therapy, and if so, is it helping? God bless you!

Oh, and what is your prognosis? Thank you jakeduck!

Liked by Leonard

REPLY
@jmjlove

@jakeduck1
…..I too have ataxia but it is after a large cerebellar stroke. It's like my left side has a mind of its own. My strength is good, but control poor. I assume your ataxia was not brought on by a stroke. I have freak sympathy. My left hand doesn't know what my right hand is doing. I know how frustrating that can be. Much sympathy. Do you find your body acting up when you begin a particular task, but while still, no one would even know? When I try to hold a drink, my hand goes all stupid, spilling drink all over. But….unless something is in my hand, the hand stays relatively still. Though I do find the arm, shoulder blade and leg likes to do major ongoing twitching. Do you have that? Ataxia is not typical after a stroke, but I can see how a clot may bring it on. Was that your case? Sounds like it hit you out of the blue. Sorry to hear that. Do they have you in therapy, and if so, is it helping? God bless you!

Oh, and what is your prognosis? Thank you jakeduck!

Jump to this post

@jakeduck1…….freak sympathy…lol. great sympathy, sorry.

Liked by Leonard

REPLY
@jmjlove

@jakeduck1
…..I too have ataxia but it is after a large cerebellar stroke. It's like my left side has a mind of its own. My strength is good, but control poor. I assume your ataxia was not brought on by a stroke. I have freak sympathy. My left hand doesn't know what my right hand is doing. I know how frustrating that can be. Much sympathy. Do you find your body acting up when you begin a particular task, but while still, no one would even know? When I try to hold a drink, my hand goes all stupid, spilling drink all over. But….unless something is in my hand, the hand stays relatively still. Though I do find the arm, shoulder blade and leg likes to do major ongoing twitching. Do you have that? Ataxia is not typical after a stroke, but I can see how a clot may bring it on. Was that your case? Sounds like it hit you out of the blue. Sorry to hear that. Do they have you in therapy, and if so, is it helping? God bless you!

Oh, and what is your prognosis? Thank you jakeduck!

Jump to this post

@jmjlove
Hi Jim,
Sorry hear all that you have been through. Did you have a hemorrhagic or an Ischemic stroke. Sounds as though your Ataxia is progressive. Mine wasn’t. It was a one time thing which happened about 20 or so years ago. Although it appeared quickly I believe that I had a subacute Ataxia which actually is caused over time but manifests itself as an acute episode. I think it was caused by seizure damage because not long before that I was in an induced coma due to Status Epilepticus. I also wonder since I have a shadow on my MRI which some say is an old mild stroke, if that could be the cause. My doctor at the time had a brain smaller than a nats.
After I got out of the hospital I never had problems again.
Are your symptoms getting better, worse or the same?
Wishing you the best,
Jake

Liked by Erin, jmjlove

REPLY

wholly cow @jakedduck1 , I'm glad you are still with us to talk about these things! you have been through alot.

I had many brain tests at the NIH when I was there. I had a magnetoencephalography, that's measuring the electircal currents off your brain by sticking your head in this huge can contraption. and I had a fMRI, I was in the scanner 90 minutes straight , I had such a headache afterwards. At Mayo the neurologist ordered some kind of test, like a shower cap with electrodes in it, measured some kind of brain impulses. The shower cap at Mayo is the same kinda cap worn at the hair salon when getting a 'frost'. I laughed about that too, I think a frost at the salon is probably cheaper – lol.

Each time I had a test, they found some kind of output from my brain, and i'm grateful. I'd laugh and ask if they found something – lol I still have some brain material left in there after all.

The NIH was very thorough and measured my acqueduct of sylvius to be .03 mm (I think something like that). I had my DNA tested for that human genome project a few years back. I must have the DNA for an acqueduct of sylvius that size? I hope the Federal Government can use that information to improve the health of earth's population 🙂

The doctors at the NIH said my brain has suffered alot of stress. Boy, I'll say that's the truth. I've never been diagnosed with ataxia, that sounds awful, and I'm sorry to hear about your ailments with that.

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@jakedduck1

@jmjlove
Hi Jim,
Sorry hear all that you have been through. Did you have a hemorrhagic or an Ischemic stroke. Sounds as though your Ataxia is progressive. Mine wasn’t. It was a one time thing which happened about 20 or so years ago. Although it appeared quickly I believe that I had a subacute Ataxia which actually is caused over time but manifests itself as an acute episode. I think it was caused by seizure damage because not long before that I was in an induced coma due to Status Epilepticus. I also wonder since I have a shadow on my MRI which some say is an old mild stroke, if that could be the cause. My doctor at the time had a brain smaller than a nats.
After I got out of the hospital I never had problems again.
Are your symptoms getting better, worse or the same?
Wishing you the best,
Jake

Jump to this post

@jakeduck1

I see. It happened, but as an episode, not an ongoing condition. Actually, I don't think mine is going to progress. Seems to be strictly the result of braindamage. It was an Ischemic stroke. It's been 3 years since stroke. No worse, no better.

"….doctor had a brain as big as a gnat's." LOL! Thanks for the laugh. Sounds like you've been through it. Thanks for taking the time to reply! Have a good day!

Liked by johnhans, Leonard

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Thank you for all the comments. It is reassuring to hear from others and I will stay closer to the site. At this time walking is the main new problem, However reviewing all the problems I have had for the last 20 years there seems to be more that is connected. Surgical incisions that don’t heal well probably have a muscle connection as well as a spastic esophagus.

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@jakedduck1

@wittmack
Hi again,
Did you go to the doctor because of specific symptoms associated with Ataxia? What are your symptoms?
Are you unstable when you walk, difficulties picking up objects, headaches, dizziness?
Jake

Jump to this post

Thank you. Yes it was a walking problem that got me to the doctor. He diagnosed ataxia and sent me on to Mayo for confirmation. It was. I tend to go off to the right and now use a cane. Dropping items is becoming more frequent.

Liked by Leonard

REPLY
@wittmack

Thank you. Yes it was a walking problem that got me to the doctor. He diagnosed ataxia and sent me on to Mayo for confirmation. It was. I tend to go off to the right and now use a cane. Dropping items is becoming more frequent.

Jump to this post

Hi, @wittmack – wanted to check in with you and see how things are going with the ataxia? Is the cane working all right for you?

Liked by Leonard

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@lisalucier

Hi, @wittmack – wanted to check in with you and see how things are going with the ataxia? Is the cane working all right for you?

Jump to this post

Thank you for checking in. Yes the cane helps. As we spend the summers on a lake I have noticed after being in a boat or traveling in a car my walking is more shaky. I also am dropping things more often.
Grateful for your post,
Muffy

Liked by Leonard

REPLY
@wittmack

Thank you for checking in. Yes the cane helps. As we spend the summers on a lake I have noticed after being in a boat or traveling in a car my walking is more shaky. I also am dropping things more often.
Grateful for your post,
Muffy

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@wittmack
Hi,
If you don’t mind me asking what is your diagnosis? I’m curious what caused your Ataxia. Do you have nerve damage or diabetes. There are so many things that can cause it.
Take care,
Jake

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@lisalucier

Hi, @wittmack – wanted to check in with you and see how things are going with the ataxia? Is the cane working all right for you?

Jump to this post

Thank you. We are just returning from a wonderful destination wedding weekend which took the starch out of me. My legs became noodles and I feel like my arms will drop off. It was very disappointing but everyone was very helpful. Are my arms part of ataxia or neuropathy?

Liked by Leonard

REPLY

@wittmack
There are so many types of ataxia.
I believe only a doctor can answer your question. Ataxia can also cause nerve damage. My ataxia was very short lived. I was back to my abnormally normal self in a week or so.
Are you having trouble moving your arm/s, problems picking up or holding onto items or are your problems more sensory in nature. The is a sensory ataxia, I’m not very familiar with it but I believe it’s associated with neuropathy somehow.
Good luck to you,
Jake

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