I'm just curious if anyone has Ataxia that has not progressed? I am currently diagnosed with vestibular ataxia, an ataxia that is unknown. Possibly genetic but we don't know. I was diagnosed in October 2011 after having symptoms for about a year prior. My neuro believes he sees some evidence of cerebellar atrophy, but it was very slight. So far it appears that I have bad spells (sometimes can go for weeks), and good spells. But, it doesn't appear that things have gotten worse. I was just wondering if anyone else out there has had their ataxia diagnosed, but not had their symptoms worsen? How long have you had it? Do you have any idea what type it is? I keep thinking is it possible that this is as bad as it will get or...
Hey, While I do not have a vestibular form, I have noticed (within the last week) a pronounced "roller coaster feeling" or downside of a backyard swing sensation each time my feet hit the ground when walking. I will take advise as well!
My ataxia issues are related to brain damage similar to a stroke. (lack of oxygen). some of my issues are related to cerebellar damage and some brain damage issues related to reading information from inner ear and other sensory and other motor issues as well...
It is Ataxia .. but caused by injury, not because of a genetic cause and it is therefore not progressive, .... I was fine one day and I couldn't stand the next. I started a LOT of therapy and have had very gradual improvement over the past 5 years. Still have a ways to go.
I've had my ataxia for 12 years. Several Neuro's believe I have SCA but my cerebellum doesn't show atrophy. I have had good days and weeks and bad ones. Overall, the progression has been very slow and in some cases I've improved. I went through the same vestibular testing. I actually can run at times and have been able to catch myself from falling when losing my balance. This was simply not possible 5 years ago. On the other hand I can't see nearly as well and the nstagmus I have seems to be getting worse. I don't use my eyes nearly as much as I once did, particularly working on the computer. I have a friend who's brother has SCA and went to China for stemcell treatment and also did some treatment with Noni. She tells me her brother has not progressed at all since both treatments several years ago. He's in a chair but seems to be doing well. I think it's hard to know what's possible with Ataxia. It's something the docs really know very little about but most refuse to let you know this. Most of us today are their research projects. So I hope for the best and the most, and believe parts of my brain can take over functions that other parts of my brain can no longer do. It's my way of staying positive.
I believe that my ataxia is due to neurological damage from Lyme disease. It began when I had a long list of bizarre, overwhelming symptoms in 2008, just before being diagnosed with several autoimmune diseases and fibromyalgia. But I knew something else had to be behind this perfect storm of illnesses, and sure enough, I was dx with Lyme plus 3 other tick-borne diseases in 2010. Lyme is notorious for triggering autoimmune diseases and fibro. After nearly 3 years of antibiotics (including IV abx) to treat the Lyme disease, many of my symptoms have subsided to a degree, including the ataxia. So it is not progressive, it has actually gotten better. I do have to be careful to not assume that I'm back to "normal", I still use a wheelchair for long distance, a walker for short distance/around the house. I have fallen and injured myself as recently as a year ago, so not out of the woods yet. I really don't know if I ever will be.
My chemical induced ataxia is not progressive so far. It will not go away. Went from falling on the ground, walking with cane back to 95 % normal. Just have to be ready at all times for whatever comes, losing balance, walking drunk or talking funny. 95 % of the time I am fine but not normal. Fatigue is my biggest nemesis. Symptoms are much worse when I am tired.
Hi Miss Cake, I have never had a diagnosis by a neurologist. My current neurologist has just accepted that I have gluten ataxia. He has prescribed medication that helps with leg pain and spasms. Fatigue is also one of my biggest problems. When fatigued I am dizzy, out of balance and my right leg drags. I don't think my ataxia is progressive. Some things are better and some things are worse. Ahbee
My ataxia sounds very similar to yours. I also can run at times, but only for a short sprint and it has to be on flat ground. I also was much worse at the beginning, and some things have gotten better. But now my nystagmus does weird bizarre things they don't understand - it's always changing. I can't drive anymore because sometimes things appear to jump out at me, and I can't look from side to side very quickly, etc. I also believe that the brain can compensate for many things, and while I am much more limited than I used to be, I DO feel very fortunate that things seem to have stabilized and I am able to function with what I have a lot better. I see to stay positve when I'm doing good, but it gets a little harder when I'm having bad days.
maryseas said:
I've had my ataxia for 12 years. Several Neuro's believe I have SCA but my cerebellum doesn't show atrophy. I have had good days and weeks and bad ones. Overall, the progression has been very slow and in some cases I've improved. I went through the same vestibular testing. I actually can run at times and have been able to catch myself from falling when losing my balance. This was simply not possible 5 years ago. On the other hand I can't see nearly as well and the nstagmus I have seems to be getting worse. I don't use my eyes nearly as much as I once did, particularly working on the computer. I have a friend who's brother has SCA and went to China for stemcell treatment and also did some treatment with Noni. She tells me her brother has not progressed at all since both treatments several years ago. He's in a chair but seems to be doing well. I think it's hard to know what's possible with Ataxia. It's something the docs really know very little about but most refuse to let you know this. Most of us today are their research projects. So I hope for the best and the most, and believe parts of my brain can take over functions that other parts of my brain can no longer do. It's my way of staying positive.
I was diagnosed 10 years ago with Sporadic Cerebellar Ataxia (unknown cause/non-hereditary). If it is hereditary, it's skipped several generations, as no one in my family as far back as we know has/had ataxia except me. My ataxia has progressed, although slowly. If I exercise for strength and balance, I seem to do better. My neurologist doesn't have much faith in doing MRI's continuously, as he said there's been studies that suggest that additional atrophy of the cerebellum doesn't necessarily suggest the ataxia has progressed. So my opinion is that with ataxia, anything is possible. ;o)
"I keep thinking is it possible that this is as bad as it will get or..."
YES, my friend...possible...Enjoy it... "or" could be years...no one knows.
I too am curious about progression. My condition began with a "minor" stroke in 2006 whereby my Cerebellum dropped as I saw in an X-Ray. The nerves in my right leg were seriously impaired. My solution was to enter a weight-training program with a personal trainer 7 days a week. My theory was that if I could build enough muscle to compensate for the nerve loss. In early 2010, another minor stroke had a significant impact on my strength and I needed assistance walking--no problema. I was satisfied with my quality of life, IMHO, the most important variable in our journey.
Flash forward to 2013: In a relatively short period, a number of downward progressive conditions hit: Dysphagia, major atrophy in dominant arm accompanied by left-hand coordination, periodic increase of tremors, speech impairment, confusion, etc. Cutting to the chase, I have now been on a plateau for a month...Who knows how long that I remain stable...could be years as I understand it...could be far less.
My attitude is simple: Embrace a positive quality of life (do things as best you can), but don't look over your shoulder for the next ax to fall.
Live for the day, one day at a time.
Thank you for your responses. I try to enjoy life as it comes day to day, but it is also hard not to think about the future. I am not good at being patient, especially when it comes to answers. My way of dealing with things is to find out everything I possibly can about whatever is troubling me, and with the knowledge I find comfort. Then I am prepared and can take steps to deal with day to day. It is not in my personality to deal with "I don't know's" which is what the doctors tell me. Perhaps this is what is meant to help me learn patience, because I am definitely having to learn.
Hi Maryseas- I have been thinking about going to China for stem cells as well but have not met/spoken to many people that have gotten the treatment that have ataxia. Could you tell me more about it or can I speak to your friend or her brother for more information and advice? Thank you, Jolanta
maryseas said:
I've had my ataxia for 12 years. Several Neuro's believe I have SCA but my cerebellum doesn't show atrophy. I have had good days and weeks and bad ones. Overall, the progression has been very slow and in some cases I've improved. I went through the same vestibular testing. I actually can run at times and have been able to catch myself from falling when losing my balance. This was simply not possible 5 years ago. On the other hand I can't see nearly as well and the nstagmus I have seems to be getting worse. I don't use my eyes nearly as much as I once did, particularly working on the computer. I have a friend who's brother has SCA and went to China for stemcell treatment and also did some treatment with Noni. She tells me her brother has not progressed at all since both treatments several years ago. He's in a chair but seems to be doing well. I think it's hard to know what's possible with Ataxia. It's something the docs really know very little about but most refuse to let you know this. Most of us today are their research projects. So I hope for the best and the most, and believe parts of my brain can take over functions that other parts of my brain can no longer do. It's my way of staying positive.
Mariola,
My friend's brother is not part of this board but let me talk with her about how to talk with you. I'm sure she would be happy to give you the info you need. She is planning to go for herself for other reasons in a few years and wants me to do this as well. I'm more skeptical but frankly haven't done any research on it at all. I'll try to put you in touch with her. Give me a few days.
MissCake2, I understand how you feel about wanting info. When I was first diagnosed I made a huge list of things to check out. I've gone through the whole thing in the last 10 years and unfortunately no definitive results. So not I'm making observations about what I'm doing and how I'm feeling and have more answers from this than any of the thousands of dollars I've spent in doctors and testing. The reality is that this is a disease that they simply know little about. If a doctor will tell you they don't know, they are being truthful. Many I see make up placating answers to get me to back off, or dismiss entirely me for asking detailed questions. I prefer the docs who tell me they really don't know. These are the ones who seem to be willing to look at new information as it presents itself. I too believe that this is simply not very predictable. Living one day at a time is a good mantra here.
I too have vestibular ataxia, the episodic type, diagnosed 10 years ago. My trigger is visual scanning. I can’t say whether my condition has progressed or not, because the symptoms keep changing. but I have learned a lot about managing my life to avoid provoking severe episodes. My symptoms started 15 years ago following a flu virus which appears to have damaged nerves in my brain.
The Johns Hopkins Medical Center has a section on it’s website with considerable information about this type of ataxia, but you are the first person I have encountered on this blog with this diagnosis. Best of luck learning patience.
Kimberly