General

Hi I'm new to the website so I'll just tell a little of my story and ask for input. My condition appeared about 15 yrs. ago and slowly progressed with many falls and jerky movements. The last two years it has really accelerated. I've seen numerous chiropractors my m.d. the movement disorder clinic at Barnes in st. Louis. Dr. Katzbauer wanted no tests because he said the treatment would be the same. Clonazapam. I fall a lot the legs can't keep up with the brain. My speech slurs a lot under stress or when I'm nervous. Thinking process is slowing down bad motor movement with leg jerks and bad articulation with arms and hands. I have no insurance so I think I'm being pacified. My m.d. finally said I was disabled with no driving climbing swimming etc. after a seizure at a local restaurant. Any suggestions something I need to do and am not I feel kind of lost and alone.

I have Ataxia too, but I don't know what type.Idiopathic. It has taken a long time, like you, to manifest into disabling symptoms. Now I can't do what I want do. I still drive locally, but my other symptoms are similar to yours- slurring, falling, small motor problems (fingers), staggering, I have no treatment or meds for this. My primary has me on an anti-anxiety pill which also helps me sleep. My neurologist sees me once a year, we talk, and I go home. What can he do? Some things I do that I think "may" help are singing in a chorus & church choir for exercise in pronounciation, , and using the treadmill at home. I can't be in an exercise group because I'd fall. I also knit pretty much every day to keep my hands active

I am thinking of progressing from a cane to a rolling walker. I know the grocery cart is my friend because the wheels make it so easy for me to shop.

Good luck in figuring out adaptations that work for you.

Umigal

I have an auto immune cerabellar ataxia. It sounds exactly the same - the seisure I can swim and drive how ever I don’t know for how long, my speech is very poor and so are my articulation skills . What state are you from? Isn’t there state Sid that you can apply for? You need to see a nerologist,take care

Terry,

How was the diagnosis done to call what you have Ataxia? Was a brain MRI done with contrast? Many of your symptoms are ataxic in nature but could be other conditions as well. If you already don't own one, I'd get a walker to help with your balance.

Dick

Hi. I’m glad your posts came to my inbox. Your symptoms are more like my husband’s than many- maybe any - others I’ve read. Painful leg jerking plus overall pain - he’s on morphine - and weakness and lack of balance. Also has arthritis. And sees a neurologist once a year. I hope things go well for you all. I’m glad you’re able to be as active as you are and wish you all the best.

Thank you for all the responses. It seems there is a common theme, take anti anxiety medicine and see me in a year. I haven't had an mri with contrast because I have no insurance yet. I was diagnosed by my primary who I've been going to for 17 years and I have just recently filed for disability in the state of IL> I would have a long time ago but it was like the doctors didn't believe me or something.

YOUR POST CAUGHT MY EYE, ON MY EMAIL....WISH I COULD GIVE YOU SOME CONSOLATION....REALLY DON'T KNOW ENOUGH ABOUT THE VARIOUS KIND'S OF ATAXIA...MINE IS CERREBELUM ATAXIA...ONLY HAVE NEVER HAD A BLOOD TEST FOR THIS..JUST DR, AFTER I GOT BROADSIDED IN MY DRIVER'S SIDE, AND HAD A WHIPLASH...CHIROPRACTIC TREATMENT, AND NO MED'S...I DO HAVE OSTEO ARTHRITIS, AND FIBROMYALGIA....SO I TRY TO WALK WITH SHOPPING WALKER...DR. PRESCRIBED 2 MG PF VALLIUM, WHICH I ONLY TAKE ONE MG, AFTER I BREAK IT IN HALF...ON OCCASION, TO RELAX MUSCLES....PLEASE KNOW YOU ARE NOT ALONE...THE PEOPLE ON THIS NETWORK REALLY DO CARE, I CARE, AND FIRST AND FORMOST GOD CARE'S ABOUT ALL OF HIS CILDREN...EVERYONE SEEMS TO HAVE SOMETHING...I STRETCH ALOT, AND PRAY CONSISTANTLY....YOU WILL BE IN MY PRAYER'S....GOD BLESS YOU...GINA...NAMA'STE

i think i used clonazapan. (it did not help). try possibly "baclophen" i herd of good results. let me know. i am jnc.

Dear Terry, A HUGE welcome to this site! You will find understanding and support from people that know what it's like to deal with ataxia here. I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) eleven years ago. It effects my gait/balance (I use a cane and an Access Active Rollator for pleasure walks outside), dexterity (writing/printing/fine motor skills), speech (slurred), swallowing (sometimes coughing/choking) and vision (sometimes double/blurry). I have these symptoms 24/7 and they have progressed over the years. I see my neurologist every six months to be monitered. My advice is to be as active, safely, as possible. I do exercises for strength and balance and do stretches each day, as my muscles get so tight. I also walk with my rollator (LOVE it) outside or on bad weather days, inside, on a treadmill (as long as I can hold on, I'm good to go...,ha!). I try to eat as healthy as possible, as it's good for general health and makes me feel better. I try to have a positive attitude, as even though I can't control having ataxia, I can control that! Ataxia doesn't "define" who you are as a person! We may have ataxia, but ataxia doesn't have us! You are not alone in your journey!!! ;o)



rose said:

Dear Terry, A HUGE welcome to this site! You will find understanding and support from people that know what it's like to deal with ataxia here. I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) eleven years ago. It effects my gait/balance (I use a cane and an Access Active Rollator for pleasure walks outside), dexterity (writing/printing/fine motor skills), speech (slurred), swallowing (sometimes coughing/choking) and vision (sometimes double/blurry). I have these symptoms 24/7 and they have progressed over the years. I see my neurologist every six months to be monitered. My advice is to be as active, safely, as possible. I do exercises for strength and balance and do stretches each day, as my muscles get so tight. I also walk with my rollator (LOVE it) outside or on bad weather days, inside, on a treadmill (as long as I can hold on, I'm good to go...,ha!). I try to eat as healthy as possible, as it's good for general health and makes me feel better. I try to have a positive attitude, as even though I can't control having ataxia, I can control that! Ataxia doesn't "define" who you are as a person! We may have ataxia, but ataxia doesn't have us! You are not alone in your journey!!! ;o)

Forgot to add, you may try to find a support group in your area, as that can be helpful! I wish I could, although there's not one close enough for me to attend. So this site (Living With Ataxia) and Ataxia UK (although I live in the US) have been very helpful! My best to you..., ;o)

Check with your local hospital. Some have special programs for people without insurance. Check with social services financial aid office at hospital. That is how I am surviving right now.

From all of these stories I have to conclude that most physicians think that ataxia has something to do with anxiety - IT HAS NOTHING TO DO WITH ANXIETY!!! Ataxia, if episodic, can be triggered by anxiety, but episodic ataxias are extremely rare. Most ataxias are problems of the Central Nervous System, which is the physical brain and the spinal cord. I personally believe that most doctors are good at memorizing and passing tests, but are lousy at thinking - just my opinion.
Please, look for a good neurologist, not just an M.D.