I joined the website today and went through several pages of posts and a lot of information, but had one question that wasn't answered. My mom has SCA 3, and so do two of her siblings (out of 3). Her mother also had it. I am worried that i have it, but i'm scared of getting tested because i fear confirmation will make me worse off.
my mom retired due to injury (most likely cause by SCA 3), but it wasn't until the actual diagnosis that i saw her get worse rapidly, depression from the diagnosis played a role in that too, im sure.
Is there anyone here that fears getting the disease due to genetics, and has purposely put off testing?
Every time i lose my balance (which i know can happen to anyone), i instantly think "that's it for me" and i just want to know what people think. is it better to know? is it better to not know but eat healthy and exercise to reduce effects later on? if i get a positive diagnosis for the disease, will it be detrimental to insurance and things like that in the future?
I was diagnosed about 6 years ago - and have noticed things getting worse as time goes on. To me, getting tested and diagnosed was a good thing - as it helps alleviate the stigma of my appearance, especially when moving. I can understand how getting a diagnosis like this would cause depression, but for me this is something that I can deal with - the knowledge that there's a reason for the way I act, walk & talk outweighs the depression caused by the diagnosis. Some days I go into a "Ptiy Me" mode, but those are few and far between. In my case, it also helps to have a supportive wife, family & friends.
Like I say, this is just me and my view - others could be different!
I have hereditary CSA2. When I had symptoms I found out because I was having the same symptoms as my dad. When I was officially diagnosed I asked the neurologist about my son and brother to see if they should be tested. They told me that only if they were having symptoms. So far my brother, who is 48 and my son who is 13 don't show anything.
I think if you want peace of mind, get tested, but if you have it the disease is incurable, progresses at whatever rate it wants to and gives you whatever symptoms it wants. Knowing is not going to change anything. The only thing it's good for is if you are applying for disability.
i feel the difference for me is that i'm not exactly looking for 'an answer' (for lack of a better word). i can imagine how hard it would be to be facing something like this and not knowing what is going on. the difference is that i know what could be going on, and i feel the diagnosis would be like a sentencing of sorts for myself. because it is hereditary in my family, it is always on my mind.
i just fear that if i am tested, how it would negatively effect me emotionally, as well as potentially hurting me in terms of insurance, travel insurance, or whatever (i am from canada and admittedly know very little about how this would work out).
BWGreen said:
I was diagnosed about 6 years ago - and have noticed things getting worse as time goes on. To me, getting tested and diagnosed was a good thing - as it helps alleviate the stigma of my appearance, especially when moving. I can understand how getting a diagnosis like this would cause depression, but for me this is something that I can deal with - the knowledge that there's a reason for the way I act, walk & talk outweighs the depression caused by the diagnosis. Some days I go into a "Ptiy Me" mode, but those are few and far between. In my case, it also helps to have a supportive wife, family & friends.
Like I say, this is just me and my view - others could be different!
Thank you Kay. it's true that knowing wont really change much. and since i have no intention of applying for any sort of disability, perhaps it is best that i don't know for now.
Kay said:
I have hereditary CSA2. When I had symptoms I found out because I was having the same symptoms as my dad. When I was officially diagnosed I asked the neurologist about my son and brother to see if they should be tested. They told me that only if they were having symptoms. So far my brother, who is 48 and my son who is 13 don't show anything.
I think if you want peace of mind, get tested, but if you have it the disease is incurable, progresses at whatever rate it wants to and gives you whatever symptoms it wants. Knowing is not going to change anything. The only thing it's good for is if you are applying for disability.
I think being diagnosed with ataxia has no effect on how fast the disease progresses. I think one can change how ataxia affects them by doing everything possible they can do to lead a healthy lifestyle, some type of exercising, eating healthy, finding support, trying to stay positive, and learning all about ataxia.
i understand it doesn't really have any bearing physically on how it progresses, i just know mentally it was negative for her (my mom) and suddenly everything became limited because she limited herself because of the diagnosis. i know everyone is different, but seeing her put these limits on herself, i wonder if it's best not knowing until it actually needs medical intervention.
Jack said:
I think being diagnosed with ataxia has no effect on how fast the disease progresses. I think one can change how ataxia affects them by doing everything possible they can do to lead a healthy lifestyle, some type of exercising, eating healthy, finding support, trying to stay positive, and learning all about ataxia.
I'm very interested in this discussion. My mother and uncle have SCA of an unknown type. I (think I) would get tested if I could, because the not knowing frustrates me. But on reading this, maybe I feel that way mostly because I can't get tested, since their type is unknown and New Zealand doesn't yet offer the new types of gene screening available in (for example) the UK.
I think I want to get tested for the same reasons you talk about: every time I stumble, I think, "is this it? Is this how it begins?". And my mother and uncle's symptom trajectories have been quite different, so there's little clue there. I imagine that if I knew, then when I did stumble, I'd know that it was the SCA, rather than wondering if it was the SCA. But would that be any better really? I imagine that if I knew I had it, I'd adopt some stricter exercise regime, but would I? I mean, I know there are huge medical benefits from exercise even if I don't have SCA, and I'm still pretty lax about it. I don't know myself well enough to know whether a known risk would provide more motivation, or less. At least now when I'm lax about my exercise, I don't torture myself about it, whereas I suspect I would if I thought it was preventing faster SCA decline.
I don't know if that's any help: in the end, it's a tricky question to answer because it depends on your own personality. One thing to remember though is that you are not your mother: just because she developed depression when she was diagnosed, doesn't mean you will.
I have not been tested yet. I am thinking it is the best option for me “now” because I have nystagmus and it’s making my life harder. I know there is medication that eases the muscle mis fires like valium so I have to have the diagnosis to get what I need. Sad but true…so many abusers ruin it for us that need it. Also, I think I’ll work on that list of things I’ve always wanted to do before I get older and this SCA6 progresses. Sca 6 does not skip generations do its probably a positive test, but that gives me a reason for all this going on either my body and a reason to LIVE LIFE WHILE I CAN. I’m 43, my dad’s onset at 55, my sister was about my age. So glad to be able to talk to people that understand my situation. God bless
I think you summed up my feels entirely. it's all very true. a day that i skip the gym now i feel bad, but would i be stricter if i knew i had SCA for sure, or would i just feel even worse about skipping the gym?
i appreciate your honesty, and i like the last part of your message. you are right, i am not my mother. thank you, Lute.
Lute said:
I'm very interested in this discussion. My mother and uncle have SCA of an unknown type. I (think I) would get tested if I could, because the not knowing frustrates me. But on reading this, maybe I feel that way mostly because I can't get tested, since their type is unknown and New Zealand doesn't yet offer the new types of gene screening available in (for example) the UK.
I think I want to get tested for the same reasons you talk about: every time I stumble, I think, "is this it? Is this how it begins?". And my mother and uncle's symptom trajectories have been quite different, so there's little clue there. I imagine that if I knew, then when I did stumble, I'd know that it was the SCA, rather than wondering if it was the SCA. But would that be any better really? I imagine that if I knew I had it, I'd adopt some stricter exercise regime, but would I? I mean, I know there are huge medical benefits from exercise even if I don't have SCA, and I'm still pretty lax about it. I don't know myself well enough to know whether a known risk would provide more motivation, or less. At least now when I'm lax about my exercise, I don't torture myself about it, whereas I suspect I would if I thought it was preventing faster SCA decline.
I don't know if that's any help: in the end, it's a tricky question to answer because it depends on your own personality. One thing to remember though is that you are not your mother: just because she developed depression when she was diagnosed, doesn't mean you will.
Thank you Marsha. i think i'm trying to keep the mind set of "live life when i can" i will prepare for the worst, but maybe not seek out such a definite diagnosis before i really need it.
Marsha said:
I have not been tested yet. I am thinking it is the best option for me "now" because I have nystagmus and it's making my life harder. I know there is medication that eases the muscle mis fires like valium so I have to have the diagnosis to get what I need. Sad but true...so many abusers ruin it for us that need it. Also, I think I'll work on that list of things I've always wanted to do before I get older and this SCA6 progresses. Sca 6 does not skip generations do its probably a positive test, but that gives me a reason for all this going on either my body and a reason to LIVE LIFE WHILE I CAN. I'm 43, my dad's onset at 55, my sister was about my age. So glad to be able to talk to people that understand my situation. God bless
gelu65, the reason people might want to spend money on getting tested is that if your family's version is late onset, and you're hitting the age when that onset typically appears, then you start noticing every time you drop your keys, or bump into something, or lose your balance, or do anything else that people who don't have a family history of SCA probably do regularly without even thinking about it. You ask yourself "does this mean I've got it too? Or am I worrying over nothing?" You want to know, or wonder if you want to know, because the not knowing brings its own kind of stress.
I was a nurse in a clinic. The last 5 years I hid my disease because I was worried financially. One day I went to my Dr. and said I couldn't do it anymore. Funny thing is that people said to me later they knew something was not right. It is a hard decision to make.
Marsha,
If your doctor has diagnosed you for nystagmus, why can’t you get Valium if it helps it?
Marsha said:
I have not been tested yet. I am thinking it is the best option for me “now” because I have nystagmus and it’s making my life harder. I know there is medication that eases the muscle mis fires like valium so I have to have the diagnosis to get what I need. Sad but true…so many abusers ruin it for us that need it. Also, I think I’ll work on that list of things I’ve always wanted to do before I get older and this SCA6 progresses. Sca 6 does not skip generations do its probably a positive test, but that gives me a reason for all this going on either my body and a reason to LIVE LIFE WHILE I CAN. I’m 43, my dad’s onset at 55, my sister was about my age. So glad to be able to talk to people that understand my situation. God bless
hi. I wrote a lengthy reply then lost it.
In brief, if you don’t get a diagnosis you will spend precious time just worrying about it.
If you do get a diagnosis there is plenty of support and the people here are great as we’re all in the same boat, so to speak.
I got clinical depression pre diagnosis as I didn’t know what was happening however; not everyone gets depression to that extent. What you have to remember is, is that “Ataxia” is a life changing event and it will massively impact on every part of your life. I’m still struggling to accept even after 5 years. I feel sorry for myself, worry about my kids inheriting it, my family, everything because everything changes.
My youngest son who is now 12 has Autism and a processing disorder. He has found it very difficult to cope and understand why “all this disabled stuff is upsetting me and you’re a horrible witch and idiot for being disabled”. Sometimes his behaviour is off the wall as his structure and routine has changed. Mummy sleeps downstairs now because she falls over a lot.
One positive thing if you have a diagnosis is the support and any equipment you may need is available easier to access.
On a down note, I can’t get any health insurance. No one will insure me sorry.
It’s a bummer and it has to be your choice. You may not even have it? At least you’ll know and you can deal with it with support. And the depression ? You may not get that either.
Try and stay strong and remember we are all here to support you any time you need us. We’re one big family. Xx take care
Dear Olive, A HUGE welcome to this site! There are wondercful people on here for support and understanding. I'm 61 years young, diagnosed with Sporadic Cerebellar Ataxia (idiopathic/unknowncause/symptoms 24/7) eleven years ago, although I had really small symptoms starting about eight years before diagnosis. Several years ago, I had genetic testing for the known recessive types of ataxia, which was negative. Per my neurologist, I may have genome genetic testing for the known dominent types of ataxia. I'm currently waiting to see if my insurance will help cover the cost. I have two grown children, as well as grandchildren and I'd like to know if there's any risk to them, although I don't know what I'd do with the information if anything tested positive (whether I'd say anything to them or not). In terms of you being tested, it's a personal decision! You may want to talk with a genetic counselor, just a thought! In regard to myself, I've always wondered "why" I have this, as no one in my family, as far back as we know, has/had ataxia, except me! But, I still believe ignorance is bliss...,ha! My best to you..., ;o)
Hi Olive, I also live in Canada. Once you are diagnosed travel insurance is very restricted. You would not be covered for any injury that could be a result of the disease. If you love to travel do it soon. I am sorry I did not do more when I could. Good luck.
I agree - travel when you can! We're going to Rome and the Med this year - because I said to my wife "who knows if I'll be able to in a few years?"
Olive & Linda - whereabouts in Canada are you? If you do get a diagnosis, there are a lot of groups around that meet so you can meet others with the same issues, and get a lot of support! I am in Ottawa - there's a group up here, and there is one in Toronto that I know of.
hi rose im with ya on the ignorance is bliss thought. personally kids have never been a thought in my mind but my boyfriend recently decided he wants them, now im not against trying to reproduce but i wouldnt want em to have ataxia, which they prob. would. but theres always a chance they wouldn't.