Ataxia Specialist

I never thought of going to an ataxia specialist until I joined this group.

They sent me some paperwork for my upcoming appointment.

Is there anything I should ask/expect?

I am an ataxia newbie.

My current neurologist said there is nothing they can do for it because it was caused by the chemo but this group has given me hope.

Check this out. Ben put tips up here. http://www.livingwithataxia.org/profiles/blogs/preparing-for-an-appointment-with-a-new-doctor

I can not find an ataxia specialist my Dr’s that I am seeing are no help they just throw their arms up until this group I was on my own trying to figure out what is wrong with me

How did you find an Ataxia specialist? I didn't know there was such a thing! This group

is GREAT!

I do not know how chemo would create ataxia, but I guess if there is a lot of potassium in it it could happen. There are some great specialists in several of the Boston hospitals. The only problem is they don’t see anybody unless referred by a neurologist.

Hello there Brittie

I am a straightforward person and you will not be happy with my comment. Sorry for that. Well then, here goes..

Don't get your hopes up high because there is NO cure for ataxia, whatever type they diagnoze you with. No medication, NADA. Unlike you being a newbie as you say, I had my 1st symptoms in 2002 and after lots of tests and MRIs was finally diagnozed in 2004 with the type ILOCA (idiopathic late onset cerebellar ataxia), which says as much as 'they don't know where it comes from'. So HURRAY..I was happy to give my condition a name whereas my 1st neurologist sent me away with the message: there's absolutely nothing wrong with you! My answer: but you can see how I walk can't you. He just looked at me, shrugged his shoulders..and that was it! I went to a University Hospital after that, had some more tests (an EMG and a new MRI of the brain) and BINGO..iloca it was. They also took some 12 samples of blood, which they can freeze, and use in their specific research program on ataxia. If something comes up, they will let me know. NO news up till now, and that's 11 years ago. SAYING: you will have to deal with this ataxia thing, no matter what type it is. You will learn to cope over the years. That I assure you. Make sure you have things you really like to do, to occupy yourself with. Focus on the CAN DO's and NOT on the things you can't anymore, which will only sadden you. Fighting a battle you cannot win is a MAJOR waste of energy, which we cannot afford. These are words coming from a realist, which will not make you any happier, I realize that. But it's the honest truth: there is NO cure, So keep your head up high, stay a positive person which is most important. We would all be crying buckets full if that would be of any help. There's nothing wrong with your mind, so be STRONG, you are your own boss, right. Wishing you the best of the best, you are not on your own as you can see on this site. Take care, hugs from Holland, Elle.


I went to the ataxia website and found a doctor, it is 3 hours away but I want to find out what I am expecting in the coming years.
delish said:

How did you find an Ataxia specialist? I didn't know there was such a thing! This group

is GREAT!

where do you live?

Since I had cancer of the blood and I was 85% cancer cells, They put the chemo directly in my spinal column. Also the high doses of chemo that I had can cause it.

Norbert N Steiner said:

I do not know how chemo would create ataxia, but I guess if there is a lot of potassium in it it could happen. There are some great specialists in several of the Boston hospitals. The only problem is they don't see anybody unless referred by a neurologist.

Hello Elle,

Thank you for your message. I'm not looking for a cure, just information to my case. I had troubles walking right after the cancer in 2005 but they didn't diagnose me until 2010. I just want to know if it will get worse or if it is standstill. I got worse in 2012 and had swallowing problems where I liquidified everything that I ate. Last year, my eyes got worse. At 16, I was told i'll never be able to drive. At 23, I was told I've never be able to ride a bike.

"Focus on the CAN DO's and NOT on the things you can't anymore, which will only sadden you." This is very true. I became depressed after not being able to ride a bike, because I can't drive and walking is a challenge.

Thank you again.

Elle Strik said:

Hello there Brittie

I am a straightforward person and you will not be happy with my comment. Sorry for that. Well then, here goes..

Don't get your hopes up high because there is NO cure for ataxia, whatever type they diagnoze you with. No medication, NADA. Unlike you being a newbie as you say, I had my 1st symptoms in 2002 and after lots of tests and MRIs was finally diagnozed in 2004 with the type ILOCA (idiopathic late onset cerebellar ataxia), which says as much as 'they don't know where it comes from'. So HURRAY..I was happy to give my condition a name whereas my 1st neurologist sent me away with the message: there's absolutely nothing wrong with you! My answer: but you can see how I walk can't you. He just looked at me, shrugged his shoulders..and that was it! I went to a University Hospital after that, had some more tests (an EMG and a new MRI of the brain) and BINGO..iloca it was. They also took some 12 samples of blood, which they can freeze, and use in their specific research program on ataxia. If something comes up, they will let me know. NO news up till now, and that's 11 years ago. SAYING: you will have to deal with this ataxia thing, no matter what type it is, You will learn to cope over the years. That I assure you. Make sure you have things you really like to do, to occupy yourself with. Focus on the CAN DO's and NOT on the things you can't anymore, which will only sadden you. Fighting a battle you cannot win is a MAJOR waste of energy, which we cannot afford. These are words coming from a realist, which will not make you any happier, I realize that. But it's the honest truth: there is NO cure, So keep your head up high, stay a positive person which is most important. We would all be crying buckets full if that would be of any help. There's nothing wrong with your mind, so be STRONG, you are your own boss, right. Wishing you the best of the best, you are not on your own as you can see on this site. Take care, hugs from Holland, Elle.

brittie your neurologist is simply wrong. No one can cure you but they may be able to lesson symptoms through a variety of therapies. my regular neurologist barely acknowledges that I have Ataxia but my doc at UCLA Ataxia has all kinds of things she is trying with Ataxia patients. Some are helping certain patients. Depending on exactly what’s going on for you there may be help to make your daily life better. I think its worth seeing a specialist at an Ataxia clinic.

Brittie; So glad you are feeling more hopeful. As long as you are breathing, in my opinion there is hope. Think about it, many of the types of SCA were only discovered in the last two years! (2012) For our daughters appointment, I typed up ALL of my questions (I had 4 pages) and gave it to the clinic for the Doctor the moment we walked in for our appointment. She managed to answer almost all of them, wrote her answers on my page of questions, and returned it to me before we left. I asked everything from expectations for progression, treatment options, medications to help specific symptoms, did my daughter need to see a geneticist (hers is hereditary), any clinical trials that she may eable to participate in to help cover expenses, additional tests she needed, what symptoms to be on the look out for, where else could we get information, (we had already joined the NAF support group and NAF), registering for CORD, help with IEP's at school? Therapies? Help applying for Social Security Disability? Any other resources? It's like one of our other members said, the more you can educate yourself on what is going on out there and learning about the disease, the more you will be able to advocate for what you need to help your individual symptoms. I found the more questions I wrote down, then organized, the more I was prepared for this first appointment. We have our second one in March, and I am doing the same thing. Good Luck, never ever give up hope!

Hello Brittie

Although I think that Elle is right in that in most cases Ataxia isnt curable, Im really pleased to say that there are ataxias where recovery is possible - I have gluten ataxia and am more or less back to normal and improving all the time and this is evidenced on MRI scans. This says that cure and/or improvement is possible depending on the cause and if the cause isnt continuing then the brain can and does heal - think brain plasticity! I also think that positive thinking is the way to go, so focus on the good - in your case that the cancer is better/in remission etc.

If you are in the UK then you must definitely have a referral to an ataxia centre (4 in the UK) and specialist, a general neuro doesnt have the expertise you need. An ataxia specialist will know the drugs that can help your symptoms and know the therapies such as physio, speech therapy etc that will help you and hte wider team will know about other useful things to know such as benefits and suitable aids such as rollators or walking poles as well as any local ataxia groups that might be helpful. So these are the sorts of things to ask about. I would also be asking for an explanation of how this condition was caused, have they seen it before and potential for imrovement, what drugs will help with what symptoms - make a list of all your symptoms and what the worst ones are, or the ones that impact most on your life and what would make the biggest difference to your life if you could improve these.

Gill

sorry, there is a good Ataxia clinic in Boston,

Dr. Schmahmann is Professor of Neurology at Harvard Medical School, Director of the MGH Ataxia Unit and the Laboratory for Neuroanatomy and Cerebellar Neurobiology, and a member of the MGH Cognitive Behavioral Neurology Unit.

Dear Brittie, A huge welcome to this site! As you know there are great people on here for understanding and support. I was diagnosed twelve years ago with Sporadic Cerebellar Ataxia (symptoms 24/7, unknown cause), although I had small symptoms sarting about eight years before diagnosis. I see my neuro (also an ataxia specialist) every six months to one year. I always get a prescription for physical/aquatic therapy, as my insurance pays for 15 sessions per year. I especially like aquatic therapy because there's no chance of falling in water...,ha! I make a list of questions ahead of time through-out the year as they come up that I want to ask. My ataxia is progressive and has progressed, therefore I've had a CT scan every five years. Although difficult, I keep as active as possible and try to eat healthy. I do exercises for strength and balance which helps! The link Jeannie posted from Ben's Friends is helpful...,my best to you..., ;o)

There are some very good post on here and the only thing I can add is for you to be sure to ask Neurologist for referral to neuro physiotherapist,

I have found that physiotherapists are much more up to date with understanding neurological conditions that the neurologist.

I live in western PA-US-near Pittsburg.



Aida Aquino said:

where do you live?

I'm not so sure there isn't anything we can do having ataxia. I have to throw in my 2 cents! I mean that is what most Dr.'s will tell us but I'm proving that to be wrong! Even my Dr. can't quite understand it! I've stopped my degeneration of my cerebellum shown by my last 3 MRI's now. Before that I had one every year also that confirmed it. I know it sounds too simple to most but a life style change helps! I'm doing what I can thinking outside the box. Using my food as meds. No Gluten, No refined sugar Nothing processed No additives, focused movements cognitive thinking games for my mind etc. Yes I do think we ataxian's need to work harder than most but hey I really believe that what ever we put into making ourselves healthier helps the outcome. But we all need HOPE so we can make that happen. :-)

Elle Strik said:

Hello there Brittie

I am a straightforward person and you will not be happy with my comment. Sorry for that. Well then, here goes..

Don't get your hopes up high because there is NO cure for ataxia, whatever type they diagnoze you with. No medication, NADA. Unlike you being a newbie as you say, I had my 1st symptoms in 2002 and after lots of tests and MRIs was finally diagnozed in 2004 with the type ILOCA (idiopathic late onset cerebellar ataxia), which says as much as 'they don't know where it comes from'. So HURRAY..I was happy to give my condition a name whereas my 1st neurologist sent me away with the message: there's absolutely nothing wrong with you! My answer: but you can see how I walk can't you. He just looked at me, shrugged his shoulders..and that was it! I went to a University Hospital after that, had some more tests (an EMG and a new MRI of the brain) and BINGO..iloca it was. They also took some 12 samples of blood, which they can freeze, and use in their specific research program on ataxia. If something comes up, they will let me know. NO news up till now, and that's 11 years ago. SAYING: you will have to deal with this ataxia thing, no matter what type it is. You will learn to cope over the years. That I assure you. Make sure you have things you really like to do, to occupy yourself with. Focus on the CAN DO's and NOT on the things you can't anymore, which will only sadden you. Fighting a battle you cannot win is a MAJOR waste of energy, which we cannot afford. These are words coming from a realist, which will not make you any happier, I realize that. But it's the honest truth: there is NO cure, So keep your head up high, stay a positive person which is most important. We would all be crying buckets full if that would be of any help. There's nothing wrong with your mind, so be STRONG, you are your own boss, right. Wishing you the best of the best, you are not on your own as you can see on this site. Take care, hugs from Holland, Elle.

P.S. Click on Member Service's to see a drop down menu of things you will need to bring to your Dr. http://www.livingwithataxia.org/profiles/blogs/preparing-for-an-appointment-with-a-new-doctor