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SpinoCerebellar Ataxia

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Unread 05-04-2009, 03:01 PM   #1
notdrunk
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Confused SpinoCerebellar Ataxia

Hello Everyone,

I am new here. I am still trying to digest my diagnosis. I have problems with dizziness, lack of balance and sometimes stumbles and falls. My gate is not what it should be, I struggle with the sobriety test and I can't walk with my eyes shut more then a step or two. It has been the last five years of symptoms worsening and seeing neurologists, doing tests and getting second and third oppinions. Even just two years ago I was wearing high heals, dancing, walking normally even in the dark. We know it is changing. We know that my cerebellum is too small, they can't tell at this point how much it has shrunk only that it is small and that my symptoms and performance during their tests is worsening. It has been concluded that as far as genetic testing can tell, it is not. But there are many genes they have been not been able to test as of yet or possibly recesive genes as the cause. Any how the Neuro team has concluded Atrophy of the Cerebellum and just last week they are now calling it SpinoCerebellar Ataxia. It just isn't one of the known forms of SCA.

Sometimes I wish I could know that it is SCA 3 ( which is so super bad) or SCA 8 (which is not so bad) just so I could know what to expect and what to prepair myself and my family for. Other times it seems that maybe the hope can remain becaue of the mystery. Any one out there who has been diagnosed with an unkown SCA. Any advice/ eperience out there about handeling this unkown/ anger/ grief/ confussion.

I am a Mommy of a two year old little lady and am half way through my second pregnancy. It matters very much to me to be as possitive and happy as possible. I don't want my kids to hurt from this. I need to figure out how to go forward and to remain myself.

Any help would be so much appriciated
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Unread 05-04-2009, 05:51 PM   #2
pabb
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Quote:
Originally Posted by notdrunk View Post
Hello Everyone,

I am new here. I am still trying to digest my diagnosis. I have problems with dizziness, lack of balance and sometimes stumbles and falls. My gate is not what it should be, I struggle with the sobriety test and I can't walk with my eyes shut more then a step or two. It has been the last five years of symptoms worsening and seeing neurologists, doing tests and getting second and third oppinions. Even just two years ago I was wearing high heals, dancing, walking normally even in the dark. We know it is changing. We know that my cerebellum is too small, they can't tell at this point how much it has shrunk only that it is small and that my symptoms and performance during their tests is worsening. It has been concluded that as far as genetic testing can tell, it is not. But there are many genes they have been not been able to test as of yet or possibly recesive genes as the cause. Any how the Neuro team has concluded Atrophy of the Cerebellum and just last week they are now calling it SpinoCerebellar Ataxia. It just isn't one of the known forms of SCA.

Sometimes I wish I could know that it is SCA 3 ( which is so super bad) or SCA 8 (which is not so bad) just so I could know what to expect and what to prepair myself and my family for. Other times it seems that maybe the hope can remain becaue of the mystery. Any one out there who has been diagnosed with an unkown SCA. Any advice/ eperience out there about handeling this unkown/ anger/ grief/ confussion.

I am a Mommy of a two year old little lady and am half way through my second pregnancy. It matters very much to me to be as possitive and happy as possible. I don't want my kids to hurt from this. I need to figure out how to go forward and to remain myself.

Any help would be so much appriciated
"SpinoCerebellar Ataxia gluten" please go to pubmed (link at the top of the page) and put those words in the search bar.....there are 12 articles that come up.....no guarentee, but please check it out
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Unread 05-17-2009, 03:14 PM   #3
HopeHunter
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I found some symptoms of your in my life last three year, and my doctors only talk about it - all ok. I have dizziness when i close my eyes (Romberg's sign), and i have tremors in all my musle, if i try too seriously to stretch it's (Cerebellar tremor (also known as "intention tremor)), i have low level nistag nistagm (eye movement) in night. And i am ready to bad prognosis of course.
*edit*
And hope in future, do not fogive abot STEM CELL research and genetics improvements. Unfortunelly i don't know wnat cells in our cerebellum and how seriosly it diffent from other nerve cell of our brain, which now already possibly to appear after stem cell therapy (of course only trial and often with animal now), and i would be very happy to listen to clever medic's specialst about it part of brain.

Take care, soory for english.

Last edited by Chemar; 07-09-2009 at 09:26 AM. Reason: NeuroTalk Forum Guidelines
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Unread 05-17-2009, 03:22 PM   #4
HopeHunter
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1. **- good forum with many clever people
2. three years ago i take too some symptoms with you
- intention tremor (when stretch my any muscle)
- Romberg's signs
- not big eye movement in the night
just no diagnosed...
3. hope in future! STEM CELL, GENE THERAPY may be do you normal people with good dance with your child
i wold be happy to know about conformity cells, which there are in our cerebellum, with other cells of our brain (wich good target for stem cell therapy even after stroke), bat can't gather info in the web abou it

take care
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Unread 07-08-2009, 11:13 AM   #5
jackie66
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Quote:
Originally Posted by notdrunk View Post
Hello Everyone,

I am new here. I am still trying to digest my diagnosis. I have problems with dizziness, lack of balance and sometimes stumbles and falls. My gate is not what it should be, I struggle with the sobriety test and I can't walk with my eyes shut more then a step or two. It has been the last five years of symptoms worsening and seeing neurologists, doing tests and getting second and third oppinions. Even just two years ago I was wearing high heals, dancing, walking normally even in the dark. We know it is changing. We know that my cerebellum is too small, they can't tell at this point how much it has shrunk only that it is small and that my symptoms and performance during their tests is worsening. It has been concluded that as far as genetic testing can tell, it is not. But there are many genes they have been not been able to test as of yet or possibly recesive genes as the cause. Any how the Neuro team has concluded Atrophy of the Cerebellum and just last week they are now calling it SpinoCerebellar Ataxia. It just isn't one of the known forms of SCA.

Sometimes I wish I could know that it is SCA 3 ( which is so super bad) or SCA 8 (which is not so bad) just so I could know what to expect and what to prepair myself and my family for. Other times it seems that maybe the hope can remain becaue of the mystery. Any one out there who has been diagnosed with an unkown SCA. Any advice/ eperience out there about handeling this unkown/ anger/ grief/ confussion.

I am a Mommy of a two year old little lady and am half way through my second pregnancy. It matters very much to me to be as possitive and happy as possible. I don't want my kids to hurt from this. I need to figure out how to go forward and to remain myself.

Any help would be so much appriciated


I too have cerebellar ataxia, and a recent 3T head scan showed slight shrinkage of my cerebellum. I was lucky enough to get referred to one of only two ataxia clinics in the UK. The Doctor there is a specialist in the SCA types and especially the gluten effects. the damage to my cerebellum and brainstem have caused total paralysis of all the back muscles from the neck to the knees-- both motor and sensory. I now get about using my calf , front thigh, abdominals and chest muscles. This Doctor also diagnosed that my vitamin E levels were low -- that is another thing he looks for in ataxia patients
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Unread 07-09-2009, 10:28 AM   #6
pabb
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Quote:
Originally Posted by jackie66 View Post
I too have cerebellar ataxia, and a recent 3T head scan showed slight shrinkage of my cerebellum. I was lucky enough to get referred to one of only two ataxia clinics in the UK. The Doctor there is a specialist in the SCA types and especially the gluten effects. the damage to my cerebellum and brainstem have caused total paralysis of all the back muscles from the neck to the knees-- both motor and sensory. I now get about using my calf , front thigh, abdominals and chest muscles. This Doctor also diagnosed that my vitamin E levels were low -- that is another thing he looks for in ataxia patients
are you seeing dr H?
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Unread 07-10-2009, 02:50 AM   #7
jackie66
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Quote:
Originally Posted by pabb View Post
are you seeing dr H?
I am indeed - He did both a 1.5T scan and a 3T scan - a very thorough blood test, He is the first neurologist to actually know about truncal ataxia that I have met. Although he cant do anything about the ataxia he has given me an open appointment just in case things get worse
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Unread 10-24-2010, 10:02 AM   #8
brotherman
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Heart Dear Everyone,

Anybody would be confused, angry and hopeless in the face of a diagnosis of SCA. You will, and I suggest you do, look everywhere on the web for likely symptoms and what you can expect. I would suggest that if you had SCA 3 or Mikado-Joseph disease, you would have symoptoms long before now and would not bother to ask. I also suggest that having genetic testing is a waste of money and will tell you nothing. Testing costs 12K$ and will tell you only what variant of the 30 or so variants there are when all the symptoms are virtually the same regardless of the variant you have.

Further, don't waste time or money going to China for Stem Cell tx. This will at best back off your sx. a few years and is mostly due to the physicsl therapy they do in conjunction with this.

Suggest you develop habits that are helpful. Turn on the bathroom light before you walk in and avoid the dark that will trip you up. I have fallen down between the john and the tub and this is no fun. Look where you are going at all times. You can't dance, swim, run or bike. Learn to live with your limitations and explore what you can still do. Don't think you can do what you used to do and overdo it. Fatigue is one of many universal symptoms. Just think, you don't have to mow the lawn anymore. Accept the aging process and learn to live with this - you'll be happier. Love the kids. They'll do anything to help Mom.

Remember, you did nothing to cause this problem. NOTHING!! This is hereditary and you were doomed to this before you were born. It may suck but you can live with it. I was the tailback in high school. I used too bike 100m every weekend. I used to swim like a fish and run like the wind. Those days are gone. Sorry for the reality but you need to know.

Brotherman
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Unread 10-26-2010, 12:03 AM   #9
NeuroNixed Craig
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First off, "WELCOME" to the NeuroTalk Forum!

I know very intimately off what you speak and how you feel. After 10 years of progressive symptoms and a couple of misdiagnosis, I was finally confirmed in November 2009 to have Spinocerebellar Atrophy with Ataxia, Cerebellar Degenerative Disease with Ataxia, Dysarthria and Hereditary Spastic Paraplegia. Let me refer you to my post after my confirmed diagnosis, which took 10 years of progressive complex symptoms to determine with the right neuro: http://neurotalk.psychcentral.com/thread110749.html

This has been one of the most informative websites I found in my research and I'm sure you will agree:
http://myweb.tiscali.co.uk/ataxia.pages/index.htm

I hope these links start you on you way of fully understanding what you're dealing with in SCA. I would also recommend you visit my personal blog listed in my sig file and go back to December 17, 2009 and move forward. I post in detail my experiences to date with this disease.

Feel free to contact me directly for any research assistance, share experiences, vent, or just talk to one who has been and is still there.
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Unread 01-31-2011, 01:53 PM   #10
Garrittygirl
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Heart The Will of God will not put you where the Grace of God will not protect you.

[ Hello my SCA Family! When I was first bombarded with symptoms of SCA, they presented 1st as a stoke, and speech dysphasia, which lasted 3 months. My oh-so-awesome ER and Neoroligic doctors BOTH dared to tell me To My Face that I was simply PRETENDING and doing all of my symptoms for ATTENTION! Well, I am an Irish redhead, and it was ON! I whispered (angrily, of course) that it was not for attention, and even my son's psychiatrist - who also saw me as part of my son's treatment, argued that my symptoms were medical, NOT psychiatric.
But, the lovely Dr.s here chose to assume otherwise. Even when the tremors began; even when my blood pressure plummeted to 60/40 and spiked to 110/100. Even when I tremored and seized so hard and long, I averaged 15-20 a day.
I saw "specialists" in Cleveland, at WVU and at various hospitals, chasing the wind for 2 LONG YEARS. I went thru their psych tests, their epileptic tests, and every other tests they could think of. I had NEVER EVEN heard of OPCA or SCA.
Finally, on Jan. 18, 2006, Dr. Sheikh {Shake} too funny, huh? diagnosed me within 5 minutes with OPCA. She also told me in no uncertain terms to "Go home and wait to die. Or, apply to the NIH as a research patient". And that is how I was introduced to the world of OPCA/SCA. For a Year SOLID, I grieved, and planned my own funeral. But, then I realized that I had this disease, it did not have me! And then in June of 2009, I went to Johns Hopkins, and I was re-examined, and re-diagnosed. It was there that I was told that I had SCA.
My symptoms include SEVERE headaches, nearly 98% of the time on my left side of my head, in my temple. Sometimes they come on so severely that they literally drop me to my knees in pain, and I am incapcitated. I have bladder incontinence. Without my meds, I have headdrop, head tremors, my arms flail out uncontrolled, as do my legs. Does anyone else actually FEEL it when their legs are about to flail? I can Feel an electrical buildup, almost like the pressure you get like when you have to sneeze, at the base of my skull, and then it transfers to the back of my thigh, and then WHAM, out kicks my leg, and I start jacknifing in seizures that hurt like mad.
What about memory loss? My short-term memory sucks, and alot of my long-term memories are being destoyed. And, if I am faced with a new or confusing situation, I can't handle it - I get upset, scared, and I break down crying, scared, like an Alzheimers patient. Does anyone else have extreme sensitivity to cold and heat?
I feel in my gut that I have more going on inside me than just SCA, but since no one else in my family has this, and no neuro around here is worth their salt, I have nowhere to turn for answers. Thank you Craig! for this site! God is Good! ♥The Will of God will not put you where the Grace of God will not protect you. For if HE brought you to it, He will Lead you through it!♥ I know I am long-winded, but I have over 7 years' worth of pent-up questions and feelings to share with anyone, someone who KNOWS!
God Bless All of You!! ~♥~ Garrittygirl!
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