Newly diagnosed

[EmWakie]

Hi, I have recently been diagnosed with Ataxia 3. I’m a 33 year old nurse and would love to hear from people living with the condition x

[Litty]

Welcome.

Everyone is very individual. I have SCA1 and found out that I had ataxia coming in my late 20s (50s now). It is horrid to find out and probably took me about a year to accept, although I still get cross and cry now!

Unfortunately it is part of your life now, but at least you are still here. You need to try and stay as active as you can.

This forum helps me. It is good to talk and ask folk in the same boat! x

[tedjohnson]

Hi. EmWakie

Probably the first thing to do is contact Ataxia uk and ask them if there is a support group you could join and they will send you a very helpful pack.

This helped me a lot in the early stages---just meeting fellow club members!! Whenever I feel a bit low I quickly think of other people with very painful problems and that helps me to count my blessings. This forum is a big support

My very best wishes. Ted

[Angelcake1]

Hi EmWakie

Welcome to the forum, hope you find it useful. Ataxia uk can point you in the right direct for any support groups in your area. You can ask on here also if you have a direct question or post and let us know how you're coping, best if luck with it all.

Do you have a good neurologist and

Do you know which type of Ataxia you have?

Just ask on her

[EmWakie]

Thanks everyone. My GP is currently referring me to a clinic in Sheffield but will definitely look into the support group. Do u find that u get really tired? x

[EmWakie]

It’s SCA 3 I have x

[sunvox in reply to EmWakie]

Hi Em -

-

First welcome to the forum, and I am so sorry to hear of your diagnosis. My name is Joe and I have SCA1 as does my father and my aunt. I am 51, a loving husband and father of 3 wonderful children.

-

I hope you won't mind a couple questions, and of course feel free to say "Go away you impertinent imp" if you feel they are too personal. The reason I ask them is only out of a desire to help if at all possible.

-

Question: Was your diagnosis done with a DNA test and if so do you know your CAG count? Also, what symptoms do you have today? What is your general level of health at the moment? Would you consider yourself "fit"? Has your GP made any recommendations?

-

Anyways, again welcome!

-

All the best,

Joe in NY

[EmWakie in reply to sunvox]

Thanks Joe, no I don’t mind at all. I had a previous brain scan about 6yr ago as I had Labrynthitis and lost my hearing, they told me a had cerablar Atrophy so did more tests-a lumbar puncture n blood test but all came back clear. The neurologist attributed my poor balance n coordination. 5 years later I want back to my GP as I thought my symptoms were getting worse and wanted a follow up MRI scan. He referrered me to a neurologist in Leeds. I had a scann more blood tests that went to an Ataxia Panel in Oxford n it came back as positive for SCA3. I now have bab balance- I walk into things frequently, my coordination is rubbish, I’m clumsy, tired but still workin. I have some slurred speech but it’s not all the time x

[claire01]

I have cerrabal ataxia (41 diagnosed 4 yrs ago though had symptoms from my mid 20s).I also go to the ataxian clinic at Sheffield between attending thete and this forum I feel positive and manage the condition....keep smiling 😀

[wobblybee]

🙂 The Ataxia Clinic in Sheffield has a good reputation, you should be well looked after. Look on ataxia.org.uk for links to Ataxia Support Groups😊xB

[TonySCA3]

Hi Em

Just seen your post. I too have hereditary SCA3 and although pushed for time right now will be more than happy to swap experiences, especially as it's often difficult to find many people with exactly the same version of Ataxia. Catch up soon. Tony

[rankin1st]

Hi Em welcome, I am sure you will find Sheffield helpful go with a list of questions. They were great with my husband and have helped us get other help. This forum is great for asking loads of questions and getting lots of practical helpful support. My husband suffers terribly from fatigue and is wobbly but we just got him a fit bit so we could begin to help him get a bit more mobile. All the best

[Lucycord123]

Hey em,

I'm Lucy. I'm 31 years old, I'm a criminal justice social worker and was diagnosed with SCA2 when i was 30...there's a long history in my family. I see this post was 2 years ago, how are you doing now? Are you still working?

Take care,

Lucy x

[EmWakie in reply to Lucycord123]

Hi Lucy, I’m 35& I’ve got SCA3. I’ve been a nurse for 10 yr but I’ve had to retire on ill health cos I’m very unsteady & I can’t physically carry out some of the work anymore. I should b able to get another job after just not for midyorks nhs. How’s your work at the moment?

Em x

[Lucycord123 in reply to EmWakie]

Hi Em,

Thanks for your reply. I'm unbalanced most times but just like I've had a few proseccos right now. I have constant pain due to muscle spasms and cramps.. And my hips and knees ache but I'm on pregablin at night which helps alot. I was reluctant at first as most of my clients abuse it however needs must.

I took some time off there to get my head around my diagnosis and some other life things going on but I'm going back on the 3rd of Feb and work has sorted me a ground floor office so shall see how it goes.

Was your diagnosis a surprise to you?Do you have kids and/or a partner? I'm a nosey so and so.. Tell me to keep me nose out if you wish 😊❤️

Lucy x

[EmWakie in reply to Lucycord123]

No not at all. It was a total surprise when I got a diagnosis, I had an acute dose of Labrynthitis so had routine head scan because of that. It all stemmed from there really. My mum n dad both carry the gene but don’t have symptoms. No partner yet, think I’ll end up as a crazy cat woman lol.

I have a daughter too, she’s 15. She’s not been tested. I saw that you have a daughter as well. How is she?

I find that going to the gym helps so much especially core exercises.

Em x