Ataxia

Hello my name is Tia not sure if this is the right place but could I talk about ataxia or is there a different group?

Hello my name is Tia not sure if this is the right place but could I talk about ataxia or is there a different group?

Good evening, I'm not sure if this group is where I should ask about this or what...I won't reiterate my health history (it's in my bio and posted elsewhere, FYI), but - the last several months, I've noticed worsening progression (rate or pace / intensity or nature of symptoms) in balance etc. Let me expound...I've fallen a few times, and can't seem to feel stable anymore, whether standing upright or laying down. This last month, I've experienced more frequent bouts of not-really-vertigo, but weird sensations like the floor suddenly starts moving underneath me, or I'm being tossed about by raging waves. And, I have trouble walking steadily. I always feel a bit unstable and like I need to hold onto a wall or something. Today, I lost count in how many times these sensations occurred on-and-off. I'm currently waiting on test results for PNS antibodies/cancer etc (Athena test code #3148). I have to get nerve tests redone in a few weeks, then I go back to my main neurologist at the end of June to get all these results and see where I'm at....my questions are: 1) Do I need to contact him now to let him know of recent changes? Will this affect anything? 2) Are there any practical steps I can take to reduce these awful sensations...I'm already nauseous from nerve pain and don't need the extra layer to exacerbate it all lol. I can handle a lot, but...I'd be grateful if this subsided, rather quickly. Thanks in advance, any information is welcome. 🙂

Hi @rivermaya34, I'm pretty much balance challenged myself. You mentioned the symptoms pretty much changed the past few months. I think it's a good idea to let your neurologist or doctor know sooner rather than later. I found some really good information that may shed a little light on what may be going on and help answer your questions.

Balance Disorders — Causes, Types & Treatment | NIDCD: https://www.nidcd.nih.gov/health/balance-disorders

I think the fact that you recognize you are having the symptoms gives you a heads up and may help you prevent a fall. Mayo Clinic has some simple balance exercises that may be helpful here - https://www.mayoclinic.org/healthy-lifestyle/fitness/multimedia/balance-exercises/sls-20076853

Hoping you have a much better day and find some answers.

Well I have ataxia got diagnosed a year ago. Over the last 5 years I thought I was clumsy I would fall out of no where or fall in the streets. Always starred up my knee got alot of bruises. It took me to get check out when family came over and I fall down the stairs and they told me I had to get checked out they are worried. And I got a MRI and my cerebellum is really small. When I got the news I cried for a bit knowing that my cerebellum and my balance wants coming back. Over the last 6 months I fell about 20 times like I don't know to walk anymore. Part of those 20 I fell down the stairs 5 times. Started speech therapy but I always had a speech problems sinece I was little so I felt like that wasn't going to help much. What I really like is physical therapy. I'm really sad there is no care. I was told I could end up in a wheelchair. I guess I'm asking for help how to deal with this.

@tiajamison
I have only had one episodic ataxia incident although your post has made me rethink of why I'm falling.
I fall often although I used to fall multiple times every day. I'm currently going to physical therapy for balance training. How are you ever going to therapy for balance training and if so did it help?
In my episode I couldn’t go up one step and I kept going off to my left I couldn’t walk straight or right only in left circles.
I believe my ataxia was caused by one of my seizure medicines probably Dilantin.
Do you weave when you walk or have a hard time walking straight or find walking slow, up an incline or walking slowly more difficult?
Thank you for making me rethink my balance issues. I have always blamed my balance on seizures & meds. I'll ask the therapist about possible Ataxia tomorrow.
Jake

I was having several troubling issues, and in December of 2014 my then-ophthamologist became both concerned and intrigued with what she said was "a most interesting optic nerve." It was during this scheduled eye exam that I voiced seeing double...so she called in another ophthalmologist (within that practice who was present that day) who specialized in ocular neurological complications. She examined me and said calmly that I needed an immediate brain MRI, which I did get. That started me on a long journey of myriad specialists, both here in Westchester County (NY) and in NYC. The brain MRI revealed disturbing areas of demyelination along with "evidence of ischemic attacks." During that time, I had all sorts of medical issues, including shooting nerve pain throughout my body (face and head included, as well as "zaps" in the brain). Headaches, intense eye pain (especially the left one that later revealed atrophy of 4th nerve), lack of appetite, urgent need to lie down and fall into troubling sleep, weakness all over, seeing double as well as many dark, large floaters, visual and aural disturbances, and just feeling that my world as I had known it was gone. An MRI of left eye ordered by MS specialist at Mt. Sinai (NYC) revealed 4th Nerve Palsy. Yeah, lots of interesting info that I learned about my eyes and nervous system.😳
My days were filled with invasive procedures/testing included testing for Graves disease, Lou Gehrig disease (ALS), multiple sclerosis, and scads of others. All THANKFULLY were negative! Except that the neurological examinations by an MS specialist revealed that I couldn't walk the line as done for inebriation testing, inability to remain upright when closing eyes (doctor grabbed me as I fell straight backwards!), and inability to walk down the hall without swaying and "waddling" to steady myself. So many specialists, so many MRIs over the following 9 years to the present. Seriously impacted my mental and emotional health. Thankfully, I had retired in 2010 so I was spared all that I ha coped with while teaching secondary and graduate school. I retired a few years earlier than planned, because of how I had begun to feel my body falling apart in and how difficult it had become to not have to turn off the classroom lights and lock the door so I could place my head down onto my desk (in the far corner of room) and fall into an exhausted nap. I'd set an alarm to go off at the end of 20 minutes, so I'd have time to go to the faculty rest room and "freshen up" so as to complete my teaching assignments for the day. I dropped my graduate school teaching because they were after school and on weekends. I took that time for myself, to focus on ME and my health issues.
Finally, about 5 yrs ago the brain lesions stabilized but the ataxia and double vision, along with nerve issues, remained. Last year's MRI showed "a mild expansion of lesions" which was alarming since the ataxia has gotten worse, including memory issues and what I call "brain pain" (as opposed to headache). and electrical pain over the entire head (with pulsations in temples and whole mouth pain).
Just before the pandemic, I did attend balance training PT/OT at a top center. I didn't find it at all helpful, so stopped after 20 sessions. I learned to live with my ataxia, but could not use a cane because I had balancing issues when I used it, and found myself in worse situation including nearly toppling several times so I stopped using it. Peripheral neuropathy in my feet didn't help the situation at all. I stopped going out since I was so self-conscious about my gait/balance, thinking that indeed I was getting "looks" when in public. I no longer walk around our property because the dips, projecting rocks and tree roots have caused me to loose my balance and I have fallen a few times. I use a treadmill, at a comfortable walking pace. Perhaps next spring I'll attempt the track in town again, and yes, will hold hands with my hubby of 53 years.💖

To this day, now 9 years to the day after that revealing eye exam, I have balance and gait issues. I've had myriad other problems that have become part of my everyday existence but my balance/gait deeply affects my self-confidence and self esteem. I've learned to walk with feet set apart, with a sway that helps to keep me from veering. I've learned how to turn slowly while also setting my gaze so as not to get dizzy (something learned during balance PT). At home, I hold banisters and use walls as "support" by using a hand to touch them as I ambulate, especially stairs. My husband holds my hand when we are out in public, gently "pulling" me toward him whenever I veer. Shopping carts are my anchor when in stores, and where carts are not available, we again hold hands. To be honest, I curtailed outdoor activities due to the gait/balance problems. I tend to bump into things while in our home, sometime onto door frames, the edges of the kitchen island, furniture (broke two toes on separate dates), and at times even walls if I misstep. Bruises on thighs/shoulders/arms sometimes make it seem that I'm abused!
I left the medical group wherein the neurologist only wanted to push gabapentin and Lyrica, telling me there was nothing else she could do. I had stopped seeing her altogether, having lost confidence and trust. Now I have an outstanding neurologist affiliated with New York Presbyterian-Columbia Doctors. I'll be having the next MRI evaluated/compared to last year's, to determine the expansion of lesions. The specialists at the prior medical group kept repeating the words that I came to detest: "There's nothing more that I can do for you." Pretty much washing their hands off. I am open to all that my new neurologist (who is highly regarded by many in the field) can contribute. At this point, I'll be happy just to hear that there are no new lesions. I've had way too many things to deal/cope with, but I am indeed concerned that there is something more that has yet to reveal itself. I just want to KNOW, so I can prepare for whatever other adjustments I must make. Complicating all of this is that I am caretaker for my husband. We are both 75 and are fortunate that we can "age in place" here in our comfortable home, which is located within short distance to carefully chosen doctors and medical facilities.

I'd like to close by saying that I am deeply aware that medications given in the past (and dropped!) as well as at least one presently taking, contribute(d) to the ataxia/gait issues or exacerbated the problem(s). That is something that anyone experiencing balance and gait issues should also examine. We have to be our own advocates, as I have learned over the past several years.

I was having several troubling issues, and in December of 2014 my then-ophthamologist became both concerned and intrigued with what she said was "a most interesting optic nerve." It was during this scheduled eye exam that I voiced seeing double...so she called in another ophthalmologist (within that practice who was present that day) who specialized in ocular neurological complications. She examined me and said calmly that I needed an immediate brain MRI, which I did get. That started me on a long journey of myriad specialists, both here in Westchester County (NY) and in NYC. The brain MRI revealed disturbing areas of demyelination along with "evidence of ischemic attacks." During that time, I had all sorts of medical issues, including shooting nerve pain throughout my body (face and head included, as well as "zaps" in the brain). Headaches, intense eye pain (especially the left one that later revealed atrophy of 4th nerve), lack of appetite, urgent need to lie down and fall into troubling sleep, weakness all over, seeing double as well as many dark, large floaters, visual and aural disturbances, and just feeling that my world as I had known it was gone. An MRI of left eye ordered by MS specialist at Mt. Sinai (NYC) revealed 4th Nerve Palsy. Yeah, lots of interesting info that I learned about my eyes and nervous system.😳
My days were filled with invasive procedures/testing included testing for Graves disease, Lou Gehrig disease (ALS), multiple sclerosis, and scads of others. All THANKFULLY were negative! Except that the neurological examinations by an MS specialist revealed that I couldn't walk the line as done for inebriation testing, inability to remain upright when closing eyes (doctor grabbed me as I fell straight backwards!), and inability to walk down the hall without swaying and "waddling" to steady myself. So many specialists, so many MRIs over the following 9 years to the present. Seriously impacted my mental and emotional health. Thankfully, I had retired in 2010 so I was spared all that I ha coped with while teaching secondary and graduate school. I retired a few years earlier than planned, because of how I had begun to feel my body falling apart in and how difficult it had become to not have to turn off the classroom lights and lock the door so I could place my head down onto my desk (in the far corner of room) and fall into an exhausted nap. I'd set an alarm to go off at the end of 20 minutes, so I'd have time to go to the faculty rest room and "freshen up" so as to complete my teaching assignments for the day. I dropped my graduate school teaching because they were after school and on weekends. I took that time for myself, to focus on ME and my health issues.
Finally, about 5 yrs ago the brain lesions stabilized but the ataxia and double vision, along with nerve issues, remained. Last year's MRI showed "a mild expansion of lesions" which was alarming since the ataxia has gotten worse, including memory issues and what I call "brain pain" (as opposed to headache). and electrical pain over the entire head (with pulsations in temples and whole mouth pain).
Just before the pandemic, I did attend balance training PT/OT at a top center. I didn't find it at all helpful, so stopped after 20 sessions. I learned to live with my ataxia, but could not use a cane because I had balancing issues when I used it, and found myself in worse situation including nearly toppling several times so I stopped using it. Peripheral neuropathy in my feet didn't help the situation at all. I stopped going out since I was so self-conscious about my gait/balance, thinking that indeed I was getting "looks" when in public. I no longer walk around our property because the dips, projecting rocks and tree roots have caused me to loose my balance and I have fallen a few times. I use a treadmill, at a comfortable walking pace. Perhaps next spring I'll attempt the track in town again, and yes, will hold hands with my hubby of 53 years.💖

To this day, now 9 years to the day after that revealing eye exam, I have balance and gait issues. I've had myriad other problems that have become part of my everyday existence but my balance/gait deeply affects my self-confidence and self esteem. I've learned to walk with feet set apart, with a sway that helps to keep me from veering. I've learned how to turn slowly while also setting my gaze so as not to get dizzy (something learned during balance PT). At home, I hold banisters and use walls as "support" by using a hand to touch them as I ambulate, especially stairs. My husband holds my hand when we are out in public, gently "pulling" me toward him whenever I veer. Shopping carts are my anchor when in stores, and where carts are not available, we again hold hands. To be honest, I curtailed outdoor activities due to the gait/balance problems. I tend to bump into things while in our home, sometime onto door frames, the edges of the kitchen island, furniture (broke two toes on separate dates), and at times even walls if I misstep. Bruises on thighs/shoulders/arms sometimes make it seem that I'm abused!
I left the medical group wherein the neurologist only wanted to push gabapentin and Lyrica, telling me there was nothing else she could do. I had stopped seeing her altogether, having lost confidence and trust. Now I have an outstanding neurologist affiliated with New York Presbyterian-Columbia Doctors. I'll be having the next MRI evaluated/compared to last year's, to determine the expansion of lesions. The specialists at the prior medical group kept repeating the words that I came to detest: "There's nothing more that I can do for you." Pretty much washing their hands off. I am open to all that my new neurologist (who is highly regarded by many in the field) can contribute. At this point, I'll be happy just to hear that there are no new lesions. I've had way too many things to deal/cope with, but I am indeed concerned that there is something more that has yet to reveal itself. I just want to KNOW, so I can prepare for whatever other adjustments I must make. Complicating all of this is that I am caretaker for my husband. We are both 75 and are fortunate that we can "age in place" here in our comfortable home, which is located within short distance to carefully chosen doctors and medical facilities.

I'd like to close by saying that I am deeply aware that medications given in the past (and dropped!) as well as at least one presently taking, contribute(d) to the ataxia/gait issues or exacerbated the problem(s). That is something that anyone experiencing balance and gait issues should also examine. We have to be our own advocates, as I have learned over the past several years.

Get a well designed walker before disaster strikes.