Ataxia

I was diagnosed with staxia caused by polineuropathy
that affects my balance.

I was dagnosed with Spinal Cerebellar Ataxia in 2017 and it has steadily worsened. I have hemiplegia, extreme difficulty speaking and atrocious balance, I have had many many tests done, but the only positive test result was GADS 65 Blood test. I even had Genetic Testing done (came back negative). The Neurologist has asked me to repeat the Genetic Testing (I do not understand why - its an expensive test and my understanding is the results for Genetic Testing do not change? I have lost my employment due to my worsening debilitating condition - I have had no treatment - not sure what to do? I had a stroke in 2013 diagnosed by PAC (Primary Care Phhysician Assistant). The Neurologist that I was seeing retired in 2017 but told me he did not think I had a Stroke, he said he thought I had Epilepsy, but did not write it in my chart because he said I would lose my driver's license and he knew I needed to work to support my family. Any helpful suggestions will be appreciated?

Ataxia snuck into my life little by little. Burst out of the box starting around 2013-14, along with gait issues and at times vertigo. I've detailed what happened in other areas of this site, so I'll just say now that it progressed over the following years until today I don't venture out as much as I used to. Totally got rid of the dismissive neurologist that finally had said to me "...sorry, there is nothing more I can do for you." Scores of bloodwork, procedures, brain MRIs and MRAs, referrals to specialists in NYC, etc., and although demyelination progressed as did my problems with electrical zaps, etc., no one would say that I had any particular disorder, especially not MS...but annual MRIs continued because a neurologist at NYPresbyterian in Manhattan said it had to be done...

Balance is a huge issue. I don't "turn" as I used to, instead turning my head first in the direction that I wish to go, fix my eyes on something and then slowly move my feet and body. That helps to keep me from struggling to maintain balance and not look as if I'd had booze in my morning coffee. Yes, I tried balance therapy but found after a few weeks that it was not helping.

I do have many medical problems that contribute, but I'll just say to you that you should insist on help with determining just what is the CAUSE of YOUR ataxia, and insist on a proactive plan for dealing with it. You may never get your total sense of control over your body but at least you can have a plan for helping yourself as best as possible. I'm considering the use of a rolator (but will look for a cool looking one!) but presently bring along my cane that has a neat "claw" that keeps it upright if I let go to examine something in a store. Has a "loop" that allows me to slip my hand through it and hangs around my wrist.

I'd like to hear from you, to learn what path you choose for addressing the challenges of ataxia.
I wish you the best.🌺

I have had issues with paralysis and ataxia on and off for the past twelve years. My latest bout of ataxia and gait issues has lasted for the past six months. I have had no GI issues whatsoever but have just been diagnosed with Celiac Disease, which is believed to be the main cause of my ataxia, as it not only attacks the small intestine but can also change the cerebellum and spinal chord. I am throwing this out there in case it is relevant to anyone (there are certainly a number of reasons for ataxias to develop) but if you are looking for a root cause of ataxia and have not been tested for Celiac, it could be worth investigating. The department head of the Celiac Center in Columbia University, Dr. Peter Green, wrote a book, "Celiac Disease: A Hidden Epidemic". My GI doctor recommended this book and I'm so glad she did. My GI doctor has not personally seen my presentation of Celiac... but she knew that it is possible. This book reveals so much about what is known and unknown about gluten ataxia. I am only writing this, again, in hopes it could be helpful to someone who has unexplained reasons for ataxia, which I had for many years (with many visits to many neurologists, rheumatologists, physiatrists etc). I had no idea that I could have no digestive issues whatsoever and be so sick from something I was ingesting. I am hoping my condition improves, though I've only been "gluten free" for the past month. I hope you find answers and that your conditions improve!

@speechless623 I have Ataxia because my Cerebellum has areas of atrophy. My balance is horrible but for me, it’s the eye sight issue is devastating. I have double vision especially in the morning. It is with me all day and shows up when I look in any direction.
My ophthalmologist declared my eyes to be healthy He said my problem is my brain. Unfortunately, I can’t drive anymore. There are volunteers in my community who have been helping by taking me to doctor’s appointments.

I am sorry and can undestand your pain. May I ask what test determinted the cause of your Ataxia as being Atrophy of your Cerebellum?

Delia - thanks for your response - it contains helpful information. Yes, I have been to three teaching hospitals, many expensive tests only to be told I have Spinal, Cerebellar Ataxia, all test results were negative except for GAD65 blood work. (No one has told me the cause of Ataxia) - Neurologist who did Lumbar Puncture on me claimed he could get no Spinal Fluid during puncture - so I had to go back and have 2nd Lumbar Puncture in the Hospitaal and no one reviewed those results with me despite my repeated requests for same. Neurologist wanted to repeat Genetic Testing, but I understand that expensive test results would not change, so why rpeat it. One of the doctors wants me to have IVIG therapy because of the high result from the GAD65 test. To me the high GAD65 result is indicative of the presence of high infection in my body. My grandson told me to have mold testing done on my home (just bought it in 2016/20117 when I got sick) and evidence of Aspergillus mold was found but my Primary Care told me that "Aspergillus is everywhere". I am in a quandary how to go forward and I am losing my ability to effectively communicate or ask for help.

My Cerebellar Ataxia was present at birth, due to an artery pressing against the nerve roots going into my cerebellum! This was not discovered until I was around 30 years old, when mild symptoms became worse! Since it really is high risk surgery, the neurosurgeons did not feel it would be wise to try to corrrct the problem, so I have had balance issues my entire life. Cranial nerve root compression, at the Cerebellar Pontine angle, within the brain, for me, has caused a partially paralyzed vocal cord, numbness in some places, on my body, fluctuating balance issues, ringing in the ears, vision difficulties possibly from damage etc. I was diagnosed with Parkinson’s Disease 6 years ago, which complicates my balance, gait, and Ataxia issues!! I had to give up a promising singing career, in my 30’s, due to vocal cord partial paralysis. Walking, for me, has become difficult! I am stiff and slow, and have to use a four pronged cane, at times!
Doctor’s can only do so much with helping me, so I make the best effort I can, to just get through each day! A positive attitude, exercising, and stretching exercises all help! Good luck to all who have been diagnosed with Ataxia!

@speechless623
The neurologist put me through the physical tests ie. Touch your nose, leg glides, the look up and down etc.
He saw my eyes shake when I was trying to look at his finger.
My gait is very bad, and I have double vision.

The MRIs I’ve had show the atrophy in my cerebellum.
I went through tests to determine whether I had vascular dementia. Turns out I have Alzheimer’s.

I have ataxia from a Malaria drug called Lariam that I had to take before, during and after going to Africa in 1997. It is awful. I was always off balance and could not focus on anything. My boss changed all my lighting because florescent lighting would make it so much worse. I went to many doctors and they kept saying I had menaires. But nothing worked. Mayo clinic in Phoenix put me on clonazepam 1mg 3xday. It actually stopped it and eventually between the clonazepam and my brain rerouting with the clonazepam I did really well for 25 years. Then suddenly the doctors here decided that I should not take clonazepam because it is bad they said. But it worked. They took me off half of it and I was in Kansas visiting my granddaughter and great grandson and I apparently had fallen. I have no memory of any of it, I just woke up still hooked up to my feeding tube and pump when my granddaughter came in and started freaking out. She wanted to know how I got a black eye and bruises around my neck. I thought she was kidding until my great grandson came in an started crying and kept saying grandma hurt. I tried to sit up and when I put pressure on my left arm pain was awful. I ended up in icu with a crushed elbow and broken arm in 2 places and a concussion. Still to this day don't have any knowledge of what happened to me. They put Mr back on clonazepam and in time I felt normal again. Now new doctor wants me off of clonazepam again and it terrifies me.