24 ,ataxia newbie

Hello,

I'm Brittany

I am 24 and found out when I was 20 that I had cerebellum atrophy caused by the cancer. I had cancer when I was 14.

About 2 years ago, I started choking while drinking, I have since learned to drink with a straw. No one could figure out what was wrong. Finally the speech therapist said it is probably caused by ataxia. I looked it up and it is a possibility.

I wonder what else I am dealing with that is caused by ataxia.

The problem is since the doctors know the cause of the ataxia, they brush it off.

I am hoping to find out more information, get more treatment from a knowledgeable doctor, and make friends that know what I am going through.

Thank you.

HI Brittany...gee so young for this to happen....well you will certainly make friends here and lots of knowledge as well..

But do find a caring Doctor for you are going to always require new skills to LiveWithAtaxia..


Hi Brittany

Im Verjinder and i was diagnosed nearly 3 years ago. So anything i can help with feel free to ask.

Hi Brittany,

I am asmia and I have ataxia type 1. Your have found the right website, you will find tons of information and support from fellow friends.

First of all, find a doctor or a hospital which specialise in ataxia, I have got got a hospital which specialise in neurological condition and physiotherapy/speech.

If you have any concerns or questions please feel free to ask.

Brittany;

We are newer to the group (September). It is our daughter who just turned ten that was diagnosed through genetic testing to have Spino Cerebellar Ataxia. I am the parent of four children with various Neurological conditions, including the youngest who has SCA and Apraxia. As someone who spends an enormous amount of time with Doctors, want to say I agree with Ozzy. You need to find a Neurologist who understands this condition, and treats you with respect and compassion. You have been through enough living with cancer, now to have aquired ataxia because of it, you need to be treated with kindness and professionalism. Brushing this off is NOT professional or kind. Where do you live? Maybe one of us in this group, can recommend such a Doctor in your area? Good luck to you, stay strong and positive, but do not put up with anyone who doesn't support you in your plan of care and answer questions as you need.

~Susan/Orlando, FL, USA~

Hello and welcome Brittie,

Here is a website for a Movement Disorders Clinic located in Duchess County, NY. ( I think Poughkeepsie is located in Duchess County, isn’t it? ).http://www.dutchessneuro.com/neurological-services/movement-disorder/
I cannot recommend anyone there as I am in Atlanta and researched this website for you. May be you could give it a try.

I noticed, from your profile, that your ataxia was chemo induced. I believe (but I could be wrong), that acquired ataxia as opposed to genetic ataxia is not progressive. This changes the whole outlook. That would mean that whatever symptoms you have now would not get worse, which would be a good thing. And new symptoms should not develop. Fatigue and other factors like a cold, will make your symtoms feel worse, but after you rest or get better from your cold, you will get back to your “new normal” . Hope this makes sense to you.

I have acquired ataxia from a stroke and although I have many symptoms, they are not progressive. So I am talking through my own experience.

My best wishes to you. Take care
Cicina

Thank you Cicina,

I'll check out that clinic. It is much closer than the one I found.

I do have chemo induced ataxia. But don't know much about it. I do know that they gave me most of the chemo in my spine and they said I'd get long term side effects up to 35 years. Right now, I am at 9 years post chemo.
Cicina said:

Hello and welcome Brittie,

Here is a website for a Movement Disorders Clinic located in Duchess County, NY. ( I think Poughkeepsie is located in Duchess County, isn't it? ).http://www.dutchessneuro.com/neurological-services/movement-disorder/
I cannot recommend anyone there as I am in Atlanta and researched this website for you. May be you could give it a try.

I noticed, from your profile, that your ataxia was chemo induced. I believe (but I could be wrong), that acquired ataxia as opposed to genetic ataxia is not progressive. This changes the whole outlook. That would mean that whatever symptoms you have now would not get worse, which would be a good thing. And new symptoms should not develop. Fatigue and other factors like a cold, will make your symtoms feel worse, but after you rest or get better from your cold, you will get back to your "new normal" . Hope this makes sense to you.

I have acquired ataxia from a stroke and although I have many symptoms, they are not progressive. So I am talking through my own experience.

My best wishes to you. Take care
Cicina

Hello Susan,

I am getting really fed up with the doctors just brushing me off which is why I found this group. I live in Hudson Valley, NY. My current neurologist is horrible. I had 2 before her but they moved to new practices. Next year, a new practice will accept my insurance so I will try them out. Thank you

Neuro Mom said:

Brittany;

We are newer to the group (September). It is our daughter who just turned ten that was diagnosed through genetic testing to have Spino Cerebellar Ataxia. I am the parent of four children with various Neurological conditions, including the youngest who has SCA and Apraxia. As someone who spends an enormous amount of time with Doctors, want to say I agree with Ozzy. You need to find a Neurologist who understands this condition, and treats you with respect and compassion. You have been through enough living with cancer, now to have aquired ataxia because of it, you need to be treated with kindness and professionalism. Brushing this off is NOT professional or kind. Where do you live? Maybe one of us in this group, can recommend such a Doctor in your area? Good luck to you, stay strong and positive, but do not put up with anyone who doesn't support you in your plan of care and answer questions as you need.

~Susan/Orlando, FL, USA~

Thank you, Ozzy

I hope to make friends and learn about ataxia

Ozzy said:

HI Brittany...gee so young for this to happen....well you will certainly make friends here and lots of knowledge as well..

But do find a caring Doctor for you are going to always require new skills to LiveWithAtaxia..



Thank you, Verjinder


Jinni said:

Hi Brittany

Im Verjinder and i was diagnosed nearly 3 years ago. So anything i can help with feel free to ask.

Thank you Asmia

Asmia said:

Hi Brittany,

I am asmia and I have ataxia type 1. Your have found the right website, you will find tons of information and support from fellow friends.

First of all, find a doctor or a hospital which specialise in ataxia, I have got got a hospital which specialise in neurological condition and physiotherapy/speech.

If you have any concerns or questions please feel free to ask.

Hi Brittany;

Did you see the Neurologist Resources list supplied by the National Ataxia Foundation? Here is the link (it is in pdf format).

http://www.livingwithataxia.org/forum/topics/24-ataxia-newbie?commentId=2508026%3AComment%3A158834&xg_source=msg_com_forum

I hope you are able to find someone more knowledgable, & quickly.

brittie said:

Hello Susan,

I am getting really fed up with the doctors just brushing me off which is why I found this group. I live in Hudson Valley, NY. My current neurologist is horrible. I had 2 before her but they moved to new practices. Next year, a new practice will accept my insurance so I will try them out. Thank you

Neuro Mom said:

Brittany;

We are newer to the group (September). It is our daughter who just turned ten that was diagnosed through genetic testing to have Spino Cerebellar Ataxia. I am the parent of four children with various Neurological conditions, including the youngest who has SCA and Apraxia. As someone who spends an enormous amount of time with Doctors, want to say I agree with Ozzy. You need to find a Neurologist who understands this condition, and treats you with respect and compassion. You have been through enough living with cancer, now to have aquired ataxia because of it, you need to be treated with kindness and professionalism. Brushing this off is NOT professional or kind. Where do you live? Maybe one of us in this group, can recommend such a Doctor in your area? Good luck to you, stay strong and positive, but do not put up with anyone who doesn't support you in your plan of care and answer questions as you need.

~Susan/Orlando, FL, USA~

Hi Brittany,welcome to site.I was just given a diagnosis by optic neurologist.My regular neurologist says I’m a working diagnosis.He says I have cerebellum ataxia .He is not sure what caused it.But is treating me with solumedrol.I just joined this web site this year told I had cerebella ataxia.Really have gotten support and lots of good info on site.Im thinking about changing neurologist myself .Si I understand.

Earlene Watson what is happening you went to an optic neurologist, I am having eye changes and got a pair of FL-41 lensed glasses to see if it helps. They do help relax the eyes when watching TV and when driving on a cloudy day, the type I ordered were for inside use. Jerry

Hi Brittany

You have found the right place here, not only for friends who can give you support and advice but even though there are many types of Ataxia all are bound by similarity of certain symptoms. I for instance have SCA8 but certain things like balance, slurring of speech and slowness of movement are no doubt common amongst all types of Ataxia. If I can help in anyway please let me know. Ataxia is not quite as common as some people may assume and the lack of real knowledge amongst many doctors often leads to a complacent, almost ignorant approach to the subject. Find a specialist with more knowledge and compassion, even if they're not local and seek out local support groups who may help.

Hi Earlene,

Thats great news. I am going to see a opthamalogist neurologist because recently my eye sight is getting worse. They thought it was MS at first because I had eye pain when I moved my eye but they ruled it out. Maybe this time, I'll mention ataxia and see if they can figure it out there.
I am hoping to get lots of support and info.

Thanks
Earlene Watson said:

Hi Brittany,welcome to site.I was just given a diagnosis by optic neurologist.My regular neurologist says I'm a working diagnosis.He says I have cerebellum ataxia .He is not sure what caused it.But is treating me with solumedrol.I just joined this web site this year told I had cerebella ataxia.Really have gotten support and lots of good info on site.Im thinking about changing neurologist myself .Si I understand.

Search the Internet, there is a lot to learn this site gives more information than your doctor,so keep watching.
I got ataxia at 69 but never determined the cause.

Ray

..Now what did I say,Britt..so pick yaself up and let us all LivewithAtaxia..


LOL..Ozzy

Hi Brittany

My name is Miles II am 46 and I have had ataxia for 15+ years now. It affects many things not just balance and coordination, your speech, eyesight,bladder and throat can all be affected. The muscles in my throat contract causing me to choke a bit.

have you joined ATAXIA UK?

Any advice just ask

hi Brittany
My name is Miles, I’m 48 and have had Ataxia for 15 or so years, Ataxia does not just affect balance and coordination it also can affect eyesight, speach, bladder and your throat also, as well as making you very tired when doing the simplest of tasks,
Have you joined ATAXIA UK?
Feel free to ask me anything further.