Genetic results

[wendygirl]

I am due to go back to London to hopefully get my test results. I am very nervous about the findings, I want to know for the future of my daughter & myself but at the same time I think what's done is done I cant change anything. I wonder if I find out what type it is will it change my way of thinking?

[Hidden]

Hi just think hard about the possible implications for your daughter before you tell her think long if you chose to tell her later it will not be a problem she has spent a long time in ignorance so a few more days thinking won't hurt

[neta]

Dear Wendygirl,

Dont think about your daughter now. Think about yourself. Even if the genetic results are positive, you can always get a second opinion. You dont say how old she is, but, if affected, she might have shown symptoms already. Also, it may have skipped her entirely. However, if she has it, I agree with the previous writer. What's the use of saying anything until she is tested. Ask about auto-immune induced CA. I am assuming neither your parents, grandparents or siblings nor her father's (your daughter's) family have this. Good luck. Neta

[Hidden]

johnpa

0 minutes ago

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in reply to wendygirl's comment I just want to make it clear I was just referring to telling your daughter not getting the results good luck from me also hope you get the answer you want

Reply to this

[wibblywobbly]

Good luck

[silkwood]

Both my children decided not to have tests.They are both in their 20s now but I went through the dilemma.

Neuro could not find a genetic link with me in time.My thinking at the time was there will probably be a cure by the time they get it.Igot mine at 47.They were both given the choice and genetic counselling was offered.I am now glad they did not have to go through the tests.For them it would have been a red herring.Some ataxias seem to be inherited,some acquired and others like me and a vast amount just don't know..

[wobblybee]

When I was diagnosed with SCA I had all the genetic tests available, my mother had suffered from similar symptoms (but never diagnosed) and I was convinced there was some connection. Nothing genetic showed up.

My children (both adults) were aware of the implications if the genetic link had been proved,

but neither one of them wanted to be tested.

[din55a]

Hi, my name is Dinesh, and I am a 47 year old male, married with 3 children; aged 22, 17 and 14.

I inherited the disorder from mum and although I knew I had the condition some 5 years earlier due to my symptoms mainly to do with balance which was getting worse overtime it was not until 2010 that I tested positively.

I am currently in full time work. I am hoping this will continue for some time yet. I am the youngest of 4 children and 2 of siblings have the condition and progression is further down the both of them.

I am coping at work but have noticed my condition deteriorate when I feel fatigued. I bought a walking stick 6 weeks ago and I am learning how to use it, It's a fold up one which I took to my work sine I use public transport. I figured it was better then looking drunk all the time.

I wondered if anybody recently has gone through medical retirement and what was their experience like? My consultant thinks I should only tell my employers of the condition when my performance is questioned.

[jomo50]

Hi Wendygirl

Sorry if I appear to have broken into your blog. I hope your results are what you want. I agree with previous respondents that if the results are positive, spend sometime yourself coming to terms with the diagnosis, before telling your daughter. As you said What will be will be, there is nothing you can do.

This message is for Neta.

Why dont you try, ataxia.org.

J

[february]

Hi Dinesh, I live in the US, so my experiences are probably different from yours re: medical retirement. Anyway, I medically retired from my job as as social worker (28 years) for the State of Michigan 7 years ago. i am 59 years young and was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) 10 years ago. I worked for 3 years with ataxia, but as it progressed everything became more difficult, and started really affecting my ability to do my job, like key boarding, writing, speaking and walking. I applied for medical retirement, and it took about 3 months to be approved. My best to you whatever you decide..., ;o)

[wendygirl]

Hello

Thank you all for your comments & advice. The doctors believe both my parents are healthy carriers so boom I have got it, they believe as long as my husbands gene is healthy my daughter who is 8 would be a healthy carrier. We have deceided for her not to be tested she is too young to go through that. Also if she came up positive how would you deal with it? Whatever the result I know I have to think of myself first.

I will update when I get my result but in the mean time I need to keep positive.

Wendygirl xxx

[february]

Hi Wendygirl, I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) 10 years ago (I'm age 59). Because I have grown children and grandchildren, I was curious about a genetic component, although no one in my family, as far back as we know, has/had ataxia except me. Therefore, last year I had genetic testing for the known recessive types of ataxia (per my neurologist), which was negative. If it would have been positive, I don't know what I would have done with the info, as there's no cure for most ataxia's (at least at this time). I also believe things happen for a reason (good and bad). I agree with others, if your testing is positive, think a while about telling your daughter (maybe talk with a genetic counselor). Whatever happens and whatever you decide, it will be OK, as you're not alone in your journey! Best wishes..., ;o)