I too have weakness on my left side. I have SCA 6 but have some symptoms of SCA2. In Queensland, Australia they have identified 50 SCA s and the genes for 28. So, if someone wants to have a genetic test they must have at least 3 living relatives with cerebella atrophy who are willing to be tested and be part of a study. If not you are not eligible for the test even if you wished to pay for it yourself. So, the diagnosis is done clinically by looking at your family tree with all it's diseases and disorders and looks. By looks my younger son has sloping eyes, which I didn't identify as being anything. However, the neurologist was fascinated as they are the cytopathy eyes which indicate that a sibling has a mitochondrial disorder, which aided in the diagnosis of my older son's muscle weakness disorder and further assisted in my clinical diagnosis. Then, there is a series of physical tests and machine operated tests which give readings and round up the diagnosis. I found it all fascinating and then this assists in providing you with a physical program with exercises to improve coordination, muscle strength and balance. I do the Feinkle exercises and find them a great help. I am to watch each movement, do it slowly so as to allow the atrophied cerebellum to fire up the muscles and build strength, and to remember to breath deeply and relax. Sometimes I focus so hard I hold my breath and forget to breathe. It's a hard road to travel at times but remember there are some very good people out there and many of them on on sites like this one.
Thank you
annie midgley said:
I too have weakness on my left side. I have SCA 6 but have some symptoms of SCA2. In Queensland, Australia they have identified 50 SCA s and the genes for 28. So, if someone wants to have a genetic test they must have at least 3 living relatives with cerebella atrophy who are willing to be tested and be part of a study. If not you are not eligible for the test even if you wished to pay for it yourself. So, the diagnosis is done clinically by looking at your family tree with all it's diseases and disorders and looks. By looks my younger son has sloping eyes, which I didn't identify as being anything. However, the neurologist was fascinated as they are the cytopathy eyes which indicate that a sibling has a mitochondrial disorder, which aided in the diagnosis of my older son's muscle weakness disorder and further assisted in my clinical diagnosis. Then, there is a series of physical tests and machine operated tests which give readings and round up the diagnosis. I found it all fascinating and then this assists in providing you with a physical program with exercises to improve coordination, muscle strength and balance. I do the Feinkle exercises and find them a great help. I am to watch each movement, do it slowly so as to allow the atrophied cerebellum to fire up the muscles and build strength, and to remember to breath deeply and relax. Sometimes I focus so hard I hold my breath and forget to breathe. It's a hard road to travel at times but remember there are some very good people out there and many of them on on sites like this one.
Thanks for the information.
EdMoose said:
Hi
Sorry to hear that you don't have insurance. Maybe now you can get something for next year non contingent on pre-existing condition.
Please make sure that your doctor sends Lymes test only to IGeneX in Palo Alto. Theirs is the only reliable complete test. My wife had two come back as false negative. The genetic test only tells you if your have a heredity CSA. But since you had speech problem come and go it does not sound like yours is heredity. Lyme's is known for morphing and changing as it grows in your system.
PG said:I passed out while walking 1/2 block home one evening. Originally they thought I had had a stroke due to left sided weakness etc. but the MRI's, CT and other test showed nothing. I was treated for high blood pressure and rocked on for 4 months until I just felt so bad went back to doctor and then changed doctors. She is a PA and did some basic neuro test in office and sent me to physical therapy and made a referral to neuro dr. Luckily a few months later a neurologist came to work at our local hospital and she saw me and did lots of test, reviewed all the MRI's etc and also consulted with some of her medical friends that are specialists. Since I could not afford the genetic blood test to determine the exact ataxia. They came to the conclusion that is was cerebellar ataxia. I also found an old letter from a family member that stated that I had an uncle that died from genetic type spino-cerebral ataxia.(I think that's how u spell it.)
rose said:A Huge Welcome PG, I too have no idea what type and why I have ataxia. As others have said, the type and degree of ataxia is different for everyone. I did have genetic testing for the known recessive types of ataxia, which was negative. My insurance covered it. My neurologist would like me to have genetic testing for the known dominant types, although I haven't yet. I was diagnosed 10 years ago, and my ataxia has progressed, albeit slowly. May I ask how you were diagnosed? Don't give up or give in to your ataxia, even though it's frustrating and challenging! I find exercise (safely) for strength and balance helps the most. You can exercise sitting if it's easier! Also, eating as healthy as possible (lots of veggies and fruit, no processed foods, etc.) is good for ataxia, as well as general health. As a rule, I use a cane to prevent falls! This site has wonderful people to offer support and understanding! You are not alone in your journey! ;o)
Hi Again PG, I bought my first cane at a drugstore, metal with a pretty pattern and wood handle. I ended up going to a health aide supply store for the cane I use now. It's also metal with a pattern, but the handle is more curved, as well as soft, and it has a hanging loop on the end, which I can put around my wrist if need be. It has a rubber tip that can be replaced when it wears out. You can also get a "quad cane" which stands by itself. I also have one like this, although I've never used it. Also, I purchased an attachment (from the same health aide supply store) that I installed on the bottom of my cane. The purpose of this device is to help me walk in snow and ice. I can flip it down and "grips" appear. If you want any other information, please don't hesitate to ask! ;o)
Hi PG!
I too have been diagnosed with Cerebellar Ataxia of an unknown type. Right now, my symptoms are not too bad - my balance is "wobbly", my gait is uneven, my speech does get slurred when I am tired or stressed, and I am sure there are other visible signs that my wife sees! I have a cane, but I don't need it too often. I use it more to let others know that I have an issue in busy places like airports. I know walking around gets more treacherous when winter arrives here in Ottawa - if I hit a patch of ice, then pavement here I come!
I have seen my symptoms worsen, but not too fast - when I was first diagnosed I was told that I would probably need a walker in 20 years or so. So its hard to know what is coming!
The people here at LWA are supportive and can relate to what you are going through.
Thank you.
Reading what I can about the symptoms surrounding ataxia seems to help with me. Drs. usually don't like patients to go searching the internet, but it seems natural to want to know what you'll be facing. Will it mean a change in living arrangements, help around the house, personal care.? Seems like we should know so that we can prepare.. Friends have also encouraged me to get a Medic Alert bracelet, and a "necklace" to wear connecting you to a company that will send a response team if you should fall and get into trouble. My altered walking and my slurring of speech has changed my life in that I don't get the exercise I need and I also don't speak up at meetings or social gatherings as much..My vision is clear, but what I experience is an inability to fixate on something, such as a street sign or route numbers, particularly if I am in a moving car. To look in another direction, I have to plant my feet, or risk throwing myself off balance even more. I think increased fatigue is common also. I need afternoon catnaps now when I never did before. I'm sure there is more to discuss but that' is where I am now.
Thank you for your information. I can see that more changes are coming just don't know how rapidly they will arrive. I think I must have had this a long time but just got to the point that it was noticeable. We would not have figured it out if had not found letter from my uncle telling me about my other uncle that died with ataxia, genetic type. It is hard to make plans for the future when I don't know the time frame I have to do it. Thanks again.
Who knows what to expect? There is no rule. Dont talk yourself into anything morbid. Maybe your CA will be static and you will plateau at a certain point. Be optimistic and try to downplay the changes, if they occur, while being safe. N
Good advice, Neta! ;o)