Joined: 03 Oct 2003 Posts: 1 Location: Spokane Wa 99207
Spinocerebellar Ataxia Posted: 10-03-03 21:18pm
Does anyone have any information about
spinocerebellar ataxia? Things like why
it shows up in one child in the family and
not another? What to expect with this?
And is it anything like freidrech ataxia?
The Dr. Told us it is the shrinking of
the cerebella but why did it show up after
the age of 47 years old?
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glucomate
New User, Becoming EHEALTHy
Joined: 15 Jul 2004 Posts: 3 Location: milton keynes. england
Cerebella Ataxia Posted: 07-15-04 12:17pm
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.
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stacey gentry
New User, Becoming EHEALTHy
Joined: 16 Jul 2004 Posts: 2 Location: Virginia
Re: Cerebella Ataxia Posted: 07-16-04 08:34am
glucomate
wrote:
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?
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glucomate
New User, Becoming EHEALTHy
Joined: 15 Jul 2004 Posts: 3 Location: milton keynes. england
Spino Cerellarataxia Posted: 07-17-04 10:05am
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
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stacey gentry
New User, Becoming EHEALTHy
Joined: 16 Jul 2004 Posts: 2 Location: Virginia
Re: Spino Cerellarataxia Posted: 07-18-04 08:19am
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.
glucomate
wrote:
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
|
Gianluca
New User, Becoming EHEALTHy
Joined: 04 Jan 2005 Posts: 7 Location: Ohio
Spinocerebellar Ataxia Posted: 01-04-05 20:39pm
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?
Joined: 16 Feb 2005 Posts: 3 Location: Manila, Philippines
Is This Thread Still Active? Posted: 02-16-05 03:34am
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?
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rleclair
New User, Becoming EHEALTHy
Joined: 28 May 2005 Posts: 2 Location: St. Louis, MO
Cerebellar Ataxia Posted: 05-28-05 20:48pm
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!
|
burntlikehell
New User, Becoming EHEALTHy
Joined: 16 Feb 2005 Posts: 3 Location: Manila, Philippines
Wow, I Wish I Had Your Braveness. Posted: 05-29-05 22:51pm
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.
|
burntlikehell
New User, Becoming EHEALTHy
Joined: 16 Feb 2005 Posts: 3 Location: Manila, Philippines
Sca Posted: 05-30-05 01:28am
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..
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joe needs help
New User, Becoming EHEALTHy
Joined: 03 Sep 2005 Posts: 2 Location: usa
Posted: 09-03-05 17:28pm
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
|
fatfamily02
Extremely EHEALTHy
Joined: 20 Jul 2005 Posts: 3050 Location: Georgia, USA
Re: Sca Posted: 09-03-05 18:50pm
burntlikehell
wrote:
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..
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.
|
simplyND
New User, Becoming EHEALTHy
Joined: 16 Aug 2007 Posts: 1 Location: unknown
Posted: 08-16-07 06:33am
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!!
well from what i learnt from this drama
was her will to live..
|
hotdidgy
New User, Becoming EHEALTHy
Joined: 14 Jan 2008 Posts: 23 Location: ar,
ansewer Posted: 01-16-08 14:44pm
I have that little known disease
|
hotdidgy
New User, Becoming EHEALTHy
Joined: 14 Jan 2008 Posts: 23 Location: ar,
leve mess. Posted: 01-16-08 14:56pm
if you want nto talk leave mess.
|
hotdidgy
New User, Becoming EHEALTHy
Joined: 14 Jan 2008 Posts: 23 Location: ar,
SCA8 victum Posted: 01-17-08 01:20am
It's important to know not all ataxia is
fatal there are diffrent types like I have
sca8 spinoocerabellar ataxia type 8
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fish
New User, Becoming EHEALTHy
Joined: 31 Mar 2008 Posts: 2
SCA 8 Posted: 03-31-08 16:43pm
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!
|
hotdidgy
New User, Becoming EHEALTHy
Joined: 14 Jan 2008 Posts: 23 Location: ar,
message Posted: 03-31-08 17:40pm
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
|
fish
New User, Becoming EHEALTHy
Joined: 31 Mar 2008 Posts: 2
8 Posted: 03-31-08 19:30pm
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.
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Schizophreniahealth
This page was last updated on June 11, 2008
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
