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Cerebellar ataxia: What treatment options should I explore?
I’m new to this. I have impaired balance, speech. I’m beginning to notice minor difficulty swallowing. I’m going to PT every week and I’ve had speech therapy. No cause has been identified. My diagnosis is based on symptoms only this far.
Are there any other treatments I should explore?
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Has Multiple Sclerosis or related diseases been mentioned? You have my empathy. It is difficult when a diagnosis is unknown
I have been there. I assume you are seeing a doctor. My best wishes.
Yes, I’m at Mayo. Thank you for your thoughts.
So I started in this journey back in 2017. I have terrible balance, walk like a drunk, have nystagmus and double vision, blurred vision, clumsy, choke on saliva. I have had numerous falls but pride myself on easily getting back up. I use a rollator as canes are inadequate now.
I had a totally different experience last week. I didn’t really fall…it was more like I melted into a heap. I could not get up. It wasn’t that I lost my strength, it’s just that I no longer had control of my arms nor my legs. They were like rubber. No ability to grasp nor propel myself. My husband tried to get me up but all I ended up with were fingerprint bruises on my body. A neighbor successfully got me into a chair. Since I was still a ‘wet noodle ’ my husband called an ambulance for me. He was worried. I told him they would do nothing for me. Hours later we came back home. I was still in this sad state. I couldn’t drag myself up the 3 steps to get in. I tried and tried and after half an hour and having absolutely destroyed the skin on my legs and knees, I was inside. (Our regular home does not have any steps. We winter in a warmer climate in a modular home with steps). Our solution to getting me into the bedroom involved my husband literally dragging me by my ankles down the hall. This lasted at least 6 hours.
My question for those who have experienced this ‘noodle’ sensation. How could I do better next time? How could I improve the situation? (I am 5 states away from my neurologist until May. I am back to my usual wobbliness now)
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I only had one episode of ataxia.
I was walking up to a friend's front door and did fine until I got to the steps. I tried and tried to lift my leg up onto the step but they wouldn't move so I decided to go back to my car. I tried to turn around starting with my right leg but I couldn't move it. I tried my left leg and although I could move it, I could only go in a circle because I could only move my left leg and ended up in the street yelling for help get me in my car. I haven't been diagnosed as having ataxia since that episode, but I do fall a lot and have weakness in my legs, but I attribute the falling to 60 years of taking seizure medicine. I also have muscle coordination problems maybe caused by ataxia or likely by my seizure medication.
Do you know the cause of your ataxia? Mine is believed to be caused by seizure medications.
Take care,
Jake
Please check for SS. Dr. Kumar and Dr. Marsh. Mayo Minnesota
Mine is idiopathic
Hello, been experiencing similar problems for over 3 years now. Last year I was diagnosed with Hereditary Spastic Paraplegia. I was doing really good tell a couple of weeks ago. For two weeks haven’t been able to walk without falling, or hitting a wall. Today has been better. Physical Therapy has done wonders for me. I also got afos (orthopedic braces for my lower legs) prescribed for me. They help so much! I walk like a tin man but at least stay up. 😊Sorry you are going through this. Warm regards
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1 ReactionHi, I’m Kate, Retiree from New Zealand. I was diagnosed with SPINO CEREBELLAR ATAXIA 5 years ago. Over time, my symptoms have worsened, it is increasingly challenging for me to navigate daily life. I would love to connect with others who truly understand what its like, as it can be a very lonely place to be.
I’m here to share my experiences, learn from others and explore different treatment options that might help manage symptoms. However long you have had this condition (or similar) I would love to hear your story and to chat.
Looking forward to hearing from you all!
Kate
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1 ReactionI also have cerebrospinal ataxia. It’s a symptom of SS. One of many. I had a leak in my dura which caused iron deposits to damage my central nervous system including my cerebellum. Dr. Marsh at Mayo Minnesota was able to locate the leak and sewed it up. But I still have the iron deposits so I still have SS and ataxia. I hope and pray the best for you.
Hi Kate, @katetikey
I've got SCA too. Mine is episodic so the symptoms come and go but in the last 5 years, I've gone from unassisted walking to needing a walker to borderline wheelchair.I spent over a decade trying to get a proper diagnosis.
I know the pain and the feeling of isolation because it's a personal experience. However, I will say that most neurological disorders and diseases are personal. That being said, I fully understand. I'm sure that you've heard all of the usual "keep your head up" or "keep moving" speeches just like I have but, this,to me at least, is like a slow motion train crash. I know what's going to happen but I have to stand by and wait in fear or nervous anticipation for the next step or downward spiral. This journey has been difficult but I've learned to live with it as best I can.
As for symptoms, I've been battling poor balance, fine motor coordination, nystagmous, and now mental impact. I'm on a couple of different medications and they definitely help with the eye movement issues.
Do the best you can every day, it's become my mantra and it keeps me going. If you ever feel alone, know that you're not.
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