|
|||
|
Message Boards
|
|||
| Hi My Name is Royce and I live in Perth Western Australia.I have lived with EA2 for around 35 years. I had my first attack at age 9, while playing rugby. I didn't know what was happening to me, it just felt like every thing was in slow motion as I lost all coordination. as the years went on I couldn't do any sport or follow my dreams of being a stuntman. as I started geting older I would go out to night clubs but the strob lights would set my attacks of, and people would think I was drunk. at the age of 18 in the early 80's i went to the doctors, they thought it was my heart so they did extensive test on me, but came to the conclution nothing was wrong with me. so I just carried on like I have for many years before. then in 2001 while at a work function I had a couple of wine's, I then had a sudden attack and dropped to the ground, I had to be carried out. I when to the doctors again, I was the sent to a Neurorigist who then told me I had EA2, I was releived I now know what i have, and I am on Diamox that will control it but not stop it. I still have attack, I can have small one While I am sitting and while I am sleeping. I still have major attacks but not as often as before. I try not to get in situation that could bring o n an attack. I am now 44 yo. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hello Dear, Thx for sharing the information on EA-2. I am Harender here from india. My 11 year old son was diaganosed with EA-2 at the age of 9 years and since than he is on DIAMOX 250 MG once in a day for 1 1/2 years. At starting he was haveing ataxia at the interval of 6 months and lasting for 2-3 weaks. since Jan 09 the frequency of ataxia has increased to 2-3 months and some times twice in a months. Neurologist has increase DIAMOX to 500MG per day and told that he may be permanent on this dose. His Blood, CF and MRI (Brain) studies are normal. Does meditation help in reduceing the frequency of attacks or any other investigation required. pl tell me also that "GENETIC TEST" for gene mutation is help in any form to treat EA-2. Also pl tell whether it is a curable or not and from where i can get a reliable information on EA-2. I pray from God for an early and permanent well being for your daughter. Bye bye |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| i was diagnosed about 9 years ago after having my first attack at 17. Most people thought I was just a drunk teenager when out in public and an attack came on. I am controlled now by medication but still get the occational episodes lasting for 3-4 days. I don't know anyone else with the condition to talk to and never talk about it with others as I dont like to be considered different. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I have been diagnosed with EA2, although my blood work has been inconclusive so far. I have been symtomatic since I was 14. (40 now) When I was 22 I was placed on Diamox. The drug works wonderful and continues to controll my symtoms. I have been on it so long that I will play with the dosage. I will double dose if I feel that I am going to be in a stressful situation. I was told by the neurologist that diamox was realatively safe and that playing with the dose would not hurt. If you have any questions that you have not been able to get answered, I would recommend contacting Dr. Jen at UCLA Medical Center. She if conducting research on Epidodic Ataxias. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| oh..and btw...we are in Ottawa, Canada...My Daughter was the first EA2 genetically diagnosed out of our large Childrens Hospital, and I was told that the "bank" the we sent this dna to, had only one other little boy with the same mutation, same symptoms...boy, I wish I could meet his Mom...just sayin'... | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My 15 year old Daughter was diaganosed w/ ea2 at the age of 13. It took many years, and she missed alot of her childhood because she was sick. Now, with the diamox, she can do so much. She doesn't get her episodes, but for maybe one a month. She takes between 500-750 mg a day, depending on how much shes doing, how stressed she is. Heat...really watch heat...the sun...I swear it brings on attacks, as well...I wish my Daughter had diamox at 9 months. She missed so much...I hope your Child has better luck. Take care, Penny | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| i was just wondering what have you noticed by taking this drug? how has it helped you i am 27 years old i think i have ea2 since i was 7 years old i have had proublems but all the kept on saying there is nothing wrong with me. my great ant was told she a form of ataxia. well i have 4 children and my 9 year old has had the same simptons as i have since he was 2years old the doctor all told me the same thing the doctors told my mother when she would take me. and when my great ant was told that what she had i told my sons doctor he said i was nuts he said he was 100% sure my son did not have any kind of ataxia i called his office 3 times a week in till he agreed to do a mri he finley had one today his doctor came in and said sorry because he said my son has ea2 im really scared about putting my 9 year old baby on a drug i dont know much about how much does i really help? and is it worth putting my son on will it make his life better or will it change him? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| hello i have been diagnoised with ea2 i live in kansas in the united states i had an mri and the dr told me that i had machado josephs disease that has no cure or treatment so i went for a second opinion to the university of utah where there are wonderful doctors. they started me on acetazolmide which has helped a lot with the symtoms that i have i also have or had terrible terrible migraine. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I am male, 29 years old. I have been on 250mg twice a day for several months now. I think It was several years before a first started seeking somekind of treatment (around year 9 or 10 of high school, initial for migraine pain). I've seen several neurologist over the years, had about four brain scans and this year is the first time that any type of useful diagnoses has been forth coming. Although I am still waiting conformation as a DNA sample has just been sent for testing. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Is good you have had some help with the symptoms. What dose are you taking? If you don't mind me asking are you male/female & what age are you? How long did you have the symptoms before you saw your Neurologist? I have been on 250mg 1/2 am & 1/2 pm. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Many thanks for your reply. I went to the website you posted & followed links to neuroscience page. I was aware of the research, the US gov. has also allocated a grant to UCLA Uni (they have given part of the grant to 4 other Uni's so they can research as well) for research into the various EA's.There is also a Uni in England conducting research as well. When I was first diagnosed there was very little info out there. I was emailing someone in USA who has EA2, however I was hoping there might be other cases in Australia. Do you have a related interest? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| The Characteristis of Episodic ataxia type 2 (EA2) typically starts in childhood or early adolescence (range two to 32 years). EA2 is characterized by paroxysmal attacks of ataxia, vertigo, and nausea typically lasting minutes to days in duration. About 50% of individuals with EA2 have migraine headaches. Frequency of attacks can range from once or twice a year to three or four times a week. Attacks can be triggered by stress, exertion, caffeine, alcohol, and phenytoin. for more info visit: http://episodic-ataxia-type2.blogspot.com ## |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Diamox was the first thing my neurologist prescribed when he suspected EA2. I have noticed some improvement of my symptoms with Diamox. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi Sorry have only just checked mess board. Thanks for your reply. As it is a rare condition wasn't sure any 1 would answer. Please feel free to post again if you need to talk about it. Has your neurologist suggested trying Diamox to help with the symptoms? |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi, I am currently living in melbourne and although I haven't been officially diagnosed with EA2, my neurologist suspects that I have it and what I've read about the condition on the internet sounds familiar to what I experience. I will be tested later this year for the condition. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I have been diagnosed with EA2 & would be grateful to hear from anyone in Australia who has it. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
Copyright © 2009 Yahoo! Pty Limited. All rights reserved. Advertise with Us - Privacy Policy - Terms of Service - Help |