Hi all I'm new, just was diagnosed with Ataxia back in October, learning to live with it, it really got bad during my pregnancy....and well it just keeps getting worse. My cerebellum was damaged due to chemo from breast cancer... I had a mri and even went to a neurologist, but they keep telling me it should be getting better but it's getting worse, I fall more often and have the shakes all over my body..hands, head ect.. I was wanting to know if there is a specialist I can see, is there anything out there that is better equipped with information then a general neuro... I guess I'm just tired of the no answers, I don't even know the underlie cause and know nothing about it really except I fall a lot, when I walk always seems like I'm drunk, shake, can't remember anything and can't focus so can't drive anymore :(
I wish I could tell you something positive about Ataxia, but I can't. I was diagnosed with Ataxia 2 years ago but have probably had it all my life. My wife says that when she met me she thought I walked funny. I had never noticed it until I turned 50. I am now 54. I walk like I'm drunk all the time and fall frequently. When I do get out and have to walk any distance, I have to use a walker. I don't drive anymore either because I have had times when my leg couln't find the brake. My Neurologist tells me there is no cure for this and it will probably get worse as I get older. He has been right on the money as my walking keeps getting worse. As for the cause of this, it could be hereditary. Is there a history of this in your family? It could also be from the chemo you received. Personally, I had ensyphalitis when I was a child and it damaged the cerebellum. My Ataxia could also be hereditary, as my father and my two brothers also stumble, so I'm not sure what the reason is for my Ataxia. As much exercise as you can do helps. Sorry I couldn't give you any good news. Just focus on the things you still can do. Good luck and I hope this helps.
Dear Teresa! There dosn't seem to be any awnsers, but there is some help! My Ataxia is new too ( less than 2 years);
I can't drive & can't walk well. My Neutologist is no help but has perscribed Aricept 10mg. Which helps with the short-term
Memory! Watch the Falling- It helps to have strong bones. Wish there was a cure for thr Ache.
All Best, Susie
Tessa, How long have you had your ataxia? In my experience having ataxia (and it seems everyone is a bit diffrent) I only got a classification of Sporatic Spinal Cerebellum Ataxia Which really means they really don’t know how or why I got this. They think it’s somehow has to be hereditary but all the test dont show that it is. I was told it could have skiped a few generations so Id need more testing to find out. I believe it’s from toxins I’ve gone to many doctors over the years and gotten many misdiagnosis and that took quite a few years, till finally going to the Mayo Clinic in Minnesota I reserved this classification at least. They said with another week and more invasive testing they would find out, but I choose not to put my body through more invasive testing. I guess Im not a gambler! That was back in 2006. So what I’ve come to realize that it’s really not worth the time or exspence to be put through grulling invasive testing anymore. One its a emotional roller coaster for me to keep waisting my time trying to find out, I need to focus on living in each moment and making adjustments to best deal as best that I can now.and keep pushing through levels. When I focused on testing it took time away from my focus on doing what I needed to do to maintain. So to me it’s not about what I can’t do any more it’s what I can do. I spend my time working on being as best as I can, using foods as meds so not to cloud my mind, focused movements (exercise) daily so I can continue to function as best as I can!
It’s not always easy to get a diagnosis or a number.
I have been having And Penlaw on every year to see the degeneration. I go to Ucsf neurology dept. They also have a clinic for ataxia there.
Not having flour, Gluten, refined sugar, preservatives etc has show where my degeneration has stopped. My Drs keep saying that its not possible to stop it once it starts so they keep checking me in disbelief. I still have symtoms that I deal with that are challenging but I let go of the fear now. That its self make ataxia much worse.
My thought is eat as well as you can exersize to maintain as much as you can. You will feel better but actually funtion much better and longer too! ;0)
Sorry I meant to say I was getting a MRI every year to see the degeneration but graduated to every 2 yrs now since there hasn’t been anymore…
Hi Tessa...First and foremost,, you MUST see an ataxia neurologist at a university research center. EVERYONEelse is just guessing. Ataxia is a rare condition for high specialty neuros. You'll get more info although you'll never have all of the answers. I'm 57,and 15 of my family are affected. 60 ataxia types and counting means lots of variations to an extremely variable condition.You will learn, but it takes time to get things in perspective, and regain some sense of normalcy 3 things are your friend...HEALTHY DIET ..important to everyone but aan ataxian even moreso...EXERCISE..not.repetitive motion at a gym, but walk, swim, bike and stretch...keep those joints loose.ATTITUDE is probably the most important of the 3, as you can live your life as best as you are able, or you can allow your world to shhrivel into non-existance. It's a process, and NEVER give up!
Hi Tessa,welcome and i'm sorry you are having so many issues related to ataxia.When i was younger and had a drink or two people called me rubber legs,looking back i now know i had a slight case of ataxia.I am 59 years old now and don't drink but you can call me rubber legs,i do look drunk sometimes and get looks but my younger brother who has been diagnosed with hereditary ataxia learned to ignore the looks long ago.My memory and focus is shot also but i don't seem to shake yet.All i know is that the ataxia is progressive and i am learning to slow down,ignore looks,and be aware of my surroundings so i don't fall or get injured.My mother who has passed, two brothers and a a maternal grandmother had ataxia,a few years before my mom passed she was using a wheelchair.None of us were ever tested for the type of ataxia but presume it to be hereditary.Good luck and be safe! Dave...
As far as I'm aware it won't get better (the thing I find hard to stomach), cause and type are hard to find, especially the cause as far as I know. I was diagnosed this year and don't particularly get the shakes, but am very unbalanced, fall easily, walk with difficulty and have bladder probs due to muscle weakness. Seeming drunk is a classic sign along with speech difficulties which I have, also cannot write properly and have difficulty with small motor movements in general. Sorry for not giving out positives but there aren't many, other than the folk on here and other sufferers in general. You, like me, have to hope things slow down a tad if not plateaux for a while. Fingers crossed eh !
PS. On the up side Xmas cards and present wrapping is a no no, result eh ?
Forgot to say memory is shot, although my neurologist who is a respected ataxia expert tells me that isn't to do with ataxia. Also, the part of the brain affected shrinks and is also the same part of the brain that gets affected by alcohol so drinking really becomes an issue, I am now one helluva cheap night out. My consultant also tells me there are about 150 known types of ataxia. Everything you hear about it will be different, different effects, experiences etc. We are all different but one thing in common, dealing on a daily basis with ATAXIA, it's tough believe me, but not an insurmountable problem. Be strong and don't give in !
You certainly are dealing with a lot! I hope the cancer is now under control.
I also have ataxia. Mine is trigged from diet and stress. Mostly Gluten. I also have Celiac Disease (no gluten!!!). Mine manifests itself in only neurological symptoms.
I have found that not only going gluten free (100%), but changing my diet significantly has been the best answer for me, along with regular exercise. I now eat mostly all produce (fruits and veggies), beans/legumes, nuts/seeds and lots of water! When I don't eat this way, I feel terrible and my ataxia is much worse for days to weeks keeping me bed bound. This kind of diet is tremendous for fighting cancer too! (My sister wrote the book "The Cancer Battle Plan")
I walk (on a treadmill mostly) 30-60 minutes 5 days a week. I also do strength training 3 days a week. These are my efforts to fight against the ataxia. I'm in a fight against it! Not only does the exercise make my muscles stronger, but it helps with balance too. Then when I do have an episode, I'm stronger and get better quicker.
We have to recognize that doctors don't know everything, and take control of our own health. Sounds like that's where you are at!
Welcome to our group!
I agree -no matter what your abilities -stay focused on what you can do and ask for help when you give it a shot and can’t do it.
I agree with Julie A push your limits, ask for help and exercise. I Ride a recumbant trike bout 20 mile a week for the past 3 yrs. It helps my mental state as well as my physical being. I use to swim. I am in wheelchair 98% trike 2%!! GO GIRL…
I have to limit my excercise…fast heartbeat from hyperthyroidism on heart pills. Would love to excercise more
Also thank you all so much for your replies and information I guess what I’m really trying to do is prove to my husband I’m not making any of this up. My life has changed in so many ways since after cancer… I just keep getting problem after problem orbs depressing so on so many pills too I just want to be understood and not feel like a burden. Problem on seeing a specialist is it can take up to 6 months and usually turned down here at UW I’m going to try though…
No problem here.:)
There is hope. I have ataxia that was induced by minocycline. I also took chemo and radiation for anal cancer. My ataxia does fluctuate, but I am much improved. In march I would collapse while walking, really strange feeling. I was walking with a cane and resting a lot hoping to feel better soon. After tracing the source of my ataxia myself thru research on the Internet. Typing in ataxia and medications and causes of ataxia. I discontinued the medication and instantly saw a huge reversal. After being told I would never be able to give up my cane, I did. I did everything I could to fight this, I gave up gluten, wheat, yeast,sugar, soy all starches rices grains and I saw more improvement. I began to walk everyday and I got even better. I started working surfing riding my bike. Do not rest, do not give in, fight with everything you got and if you don’t gain at least you will lose less or maybe more slowly and at the very least if that does not work at least you will know you gave it your best.
I have up and down periods and yes it can be disappointing to go backwards, but I have never gone back to the cane or collapsed since then. Yes I drop things, I bump into things, stumble on things that are not there. Lose my balance and walk like a drunken sailor with the best of them. But it’s better most of the time. Push but not too hard. You have to find a balance. Emotional issues like stress, disappointment or anger can really trigger some symptoms because now my brain is on overload.
Each one of us with this disease are so different, our symptoms and our limitations, but we all have been dealt a bad hand. I know some cannot do anything to help there ataxia, I just hope that you can.
it could have been, that your body would hot have tolerated the radiation and chemotherapy for your cancer. One cause for that would be that you would be carrier of one or two mutatons of the AMT gene. You should try to get this diagnosed, because in case you would have got this, future treatment could be designed for you in a better way, avoiding "radiomimetic" drugs. In case of carrying two alleles it could be that you would have AT-Ataxia Telangiectasia; but not in the classic, heavy form, by which children and young people often die before they enter their twenties, but a variant form with milder symptoms. In this case the underlying condition AT could have fostered the progression of your ataxia. What regards my symptoms: They got worse at different times, but also got better again.i have got my own emergency methods. Much time for me personally, alone, is necessary, enough sleep.
Have you got problems with your eyes, too?
Kind regards, Akita
(i am in a similiar situation 2008 - leukemia with stem cell transplantation , 2011 ataxia onset, now approach to diagnosis, still living!!)
Hi Tessa, This may help, I am on the medication for Parkinson’s disease, it helps with shaking, I had a tremor on my left side, now it has gone away, only comes back when I am upset or stressed! The medication also help with balance and co-ordination. Your neurologist can prescribe this for you. Hope this is helpful. Stay strong and don’t give up!
Hi Tessa and a BIG welcome! This is a great site with very caring people. Hopefully you'll find the support you need to deal with the frustrations and challenges of ataxia. I'm 58 years young, diagnosed about 8 1/2 years ago with sporadic cerebellar ataxia (non-hereditary/unknown cause). I agree with what others have said. Eating healthy and exercising is so important and helpful for ataxia! A positive attitude also helps, as that's something you can control! Although it's difficult, concentrate on what you CAN do, rather than what you can't do! I see my neurologist annually, as he checks for progression of my ataxia (every 3 to 5 years I have an MRI, which shows atrophy in my cerebellum) and for signs of MSA (multiple symptom atrophy) and Parkinsonism. So far, so good! In terms of a "specialist', I would suggest you look for a neurologist that specializes in ataxia. Best wishes! ;o)