I have ataxia and know all there is to know about it. Your message was posted last october so I dont know if you still require information,please message me an answer if you do. Best of luck from glucomate in england.

hi, I am in the process of being tested for spinocerebellar ataxia. I am struggling to learn as much as I can about it. Can you help me?

Hi stacy, first, please dont panic, you are being tested for ataxia, I presume someone in your family has ataxia and maybe you have inherited from them or are you the first in your family? My mother had ataxia, and both me and my brother have it. There are only the two of us and both affected, normally out of all children 50% are affected. This type of ataxia comes on at 40yrs and over and is slow progressing,no one can predict how quickly the symptoms will appear but they creep up gradually. Main symptoms are loss of balance and co-ordination with difficulty in walking speech can be affected also so can swallowing. The nerves that send signals to the muscles are affected there-fore making co-ordination a problem, as far as I can see its purely luck as to how fast it progreses, some people will develope a few symptoms others more, its a case of wait and see and hope. I was diagnosed at 50yrs iam 55 now, I walk with the aid of a walking stick my speech is ok but I do tend to chock some times on drinks. Although this all sounds dreadful, I have a friend with cancer and I would not swap as I intend to live a full life! I must mention that I have 3 children all over the age of 16yrs. This ia the age they can be tested in eng. Not before, but they have all choosen not to be tested as it will affect them with life assurance loans and morgages etc, and what they dont know they cannot declare,thats the way it works here. Please contact me again any time. Let me know if you would like my email address as there is more to tell you, if you need any moral support let me know. My name is eileen hawes. Bye for now. Good luck

Hi eileen,
thank you so much for writing me back. My situation is kind of crazy. No one in my family has ever been diagnosed. I am only 27 and I just recently had a baby. They believe that stress on my body caused it to progress. Two weeks ago the doctors were telling me I had charcot-marie-tooth disease. Me going back and forth to the doctors has been going on since december. I am getting tired of not knowing. I am trying to be as patient as I can, but it is hard to do when you have a one and half year old running around and you can't. I would love to have your email. If you have any information at all or know where I can find it. My problem is there seems to be so many types and I guess I am still in shock of the news. My doctors are setting me up for my second brain scan this week and sometime this month I am suppose to get the genetic testing done. Please, if you have any information I would really appreciate it. Thank you so much for your response.

I am 34, diagnosed at 33, with sa.

I'm at a loss with this condition. I've basically been limited to what I can do. Just a simple task as walking (which I took for granted) is very difficult. I recently moved back in with my mother, sister and niece. Because I was having way to many falls and hurting myself when I lived alone. It's nice to have my families support, with most everything I do. I'm looking for any suggestions from anyone, who is new to this condition and having a difficult time dealing.

My biggest worry is, i've always dreamed of finding the right wife and bringing kids into this world. But after not be able to do "a lot" of different things with my 2 year old niece. I feel there is no way I could put my burdon on a family. I would like to know how someone deals with that?


Thank you very much,
gianluca

My name is derrick, i'm a chinese living in the philippines.
My father died at 52 from this disease as well as 3 of his sisters. My father got it when he was 38. Last year, my limbs started shaking. I especially noticed this when I picked up a glass of water, I couldnt walk straight anymore and it was becoming hard to talk clearly. Recently, I learned from a cousin(they have it too) that sca type 2 was the disease of our family. I'm not diagnosed yet but I can feel that something is wrong with me.

I am only 24 years old.

Do I have spinocerebellar ataxia 2?
How come it manifested so early?

I am 28 years old and I have ataxia, probably spinocerebellar ataxia. I was diagnosed at 24, started to become uncordinated, that I noticed at 16. I am on my fifth nuerologist and they have no idea what is wrong with me.

I admit it is very frustrating and at first when I didnt even have the ataxia diagnosis, I was going crazy. I was so scared. But now that time has passed and I have an incredible boyfiend that loves and cares for me no matter what, my additude has changed. I am not as scared anymore, all of this is just a pain in the behind to me. What happens to me happens, it makes me a better person for it. Keep a positive additude, I know it is hard, but you can do it!

I too am not afraid of dying anymore. What I fear is that someday, I might not be able to do the things that I love doing. You see, I am a regular volunteer for unicef phils and for a local orphanage which supports street children.



I also saw my father go through this disease and I know how it affected my family especially my mom. I'd hate it if they'd have to go through this again with me this time.



Anyway, I have a feeling that severe stress accelerates this condition. Could it be possible?

Stress does cause symptoms to come out more but not sure if it expedited progression, it does make sense. When I moved to another state I was under alot of stress and my symptoms became worse.

My father started to have it when his construction business started to get bankrupt... My aunt started to have it when her husband started to have an affair with another woman...I started to have it when my father died, when we moved to another house and when I broke up with a girl- all of these are stressed related.. Hmm,makes sense...

Maybe someone should make a study on this and if it is found out that this is true, maybe we can help a lot of sca carriers..

My wife has spinocerebellar ataxia and we have no ideal whats next she is having eye problems right now and is in alot of pain looking for others who have it to let us know whats next

yes if stess escalates the syptoms of this disease, beta blocker could stop the stress therefore slowing the progression. Maybe you all should try too take beta blocker--for stress, anxiety. And keep taking them even when it seems not stressful in your life. I take ace inhibitors for my blood pressure, and beta blockers for blood pressure and heart condition. I really appreciate the way they keep me calm and unstressful. Even when things seem good.

hi

I under stand your situation, Their is a drama based on a true story about a girl havening spinocerebellar Atrophy and her strugle to live...its sad..however
she wanted to live life to the max. This girl is name Aya Kito.

This is a link to her diary, she wrote in it every single DAY of her life until she cannot write no more. She was only 15!!

http://diaryofaya.blogspot.com/

Here is a link to the drama

http://en.wikipedia.org/wiki/1_Litre_of_Te ars

why did i post the link?

well from what i learnt from this drama was her will to live..

I have that little known disease

if you want nto talk leave mess.

It's important to know not all ataxia is fatal there are diffrent types like I have sca8 spinoocerabellar ataxia type 8

i have ataxia type 8 too. SCA 8. I'm only 27. i don't use anything to walk but my gait is definatly affected as is my voice and swallowing. the doctors think i've had it since i was 6!

hi fish i would like to speak 2 u agian i never meet any1 with spinocerabellar ataxia type8 thats nice too know i'm not alone

hi tell me about yourself -- how old are you? how far has your disease progressed? good to hear that theres someone else with sca 8.