Hi I’m new here!

We have hereditary ataxia in our family great grandfather, grandma and mother. My 2 older sisters were diagnosed and now I am showing symptoms I have a neurologist appointment but haven’t been diagnosed yet so wish me luck that maybe I don’t :woman_shrugging: I am 43 and love to lift weights so hopefully that helps me if not :blush:


Welcome to the site. FYI, exercise is good for Ataxia. Keep up the good work but do it safely and don’t overdo it! Just know it’s not a cure. Also include cardio in your routine.


Keep positive and do as many active things as you are able to safely manage… Some days willl be better than others but keep positive and fit and stay away from liquor, it helps .


Welcome … i show symptoms but not diagnosed … my brother had Fredricataxia but my symptoms does show as i get older but i stay active however i did gain wgt and that more the comfort of not moving because i feel safe … my symptoms got stronger … it’s a mind over matter so i need to get myself together and get more active and do the exercise and just do it…
It’s just hard…but i need to do it


I like the way you think. But watch your weight. That could add.

1 Like

Welcome Lindylu it’s interesting to hear gt grandma was diagnosed. Fingers crossed for you but yes exercise is always good.
As already mentioned, weight control too. Weight gain is so incremental… I gained a stone over 10 years and another stone over each of next ten years so, yes, 3 stone heavier! Sugar is main danger … I never buy sugar but it’s in all the things I love. Good luck x

Hi :slightly_smiling_face:, welcome :slightly_smiling_face:
I would say…enjoy doing whatever makes you happy, for as long as possible🙂

Hi :slightly_smiling_face: welcome
Keep doing what you enjoy for as long as you enjoy it🙂

Thank you … it’s hard but i have to stay active and that’s keeping my job an moving … Living in NYC … you stay moving,

1 Like

Thank you everyone being that I have this in my family growing up with it I have learned to stay small my mom and sister are over weight and it is worse on you and the people taking care of you! It sucks but I’m not going to get me negative thinking I haven’t been diagnosed yet anyway :blush:

Gaining weight has nothing to do with Ataxia. Just make sure you eat a proper diet and get enough exercise.

1 Like

Oh I know but it helps to not be, I’ve only ever known over weight people having this disease and it makes everything even harder. I don’t want to make this harder than it is.

1 Like

Update: I still haven’t been diagnosed still waiting for a doctor :roll_eyes: but my sisters have cerebellum ataxia so that is probably what I have anybody else in this same boat?

Waiting for a doctor regarding what? Have you had a MRI? If so, results should only take a short time to be publicized. Don’t think that if one person in your family tests positive that you have it also. What symptoms are you experiencing?

I assume that your sisters have a Neurologist since they’ve already been diagnosed. Could you use that MD as well?

To get diagnosed no mri yet but I am holding hope it’s negative. Walking is extremely difficult, my speech is slurred I have the delayed look, I look like I’m drunk, choke on everything trust me I am hoping I don’t have this but my symptoms are getting worse.

We don’t live in the same area so we can’t use the same doctor all the docs around here want referrals so I’m waiting for my doc to refer me somewhere they a team that do that.

Does your health plan allow you to directly contact a specialist or must you need a referral from your primary? Do you live near a major city? Look up a neurologist near your zip code or postal code (I think it’s called) and make an appointment. One of the worst things about any health problem is not being able to know what it is. It doesn’t help to keep waiting.

Well I had insurance that required a referral so I got a different one that doesn’t. But the doctors require one over here and I don’t live too close to a major city unfortunately but maybe an hour away. I want to know so i can rule it out or know at least these doctors have no idea the tole it takes on your mind.

Perhaps you should get a primary MD then they could refer you. Not knowing can be the worse thing. MAKE IT HAPPEN! :wink:

1 Like

:slightly_smiling_face: This link might be helpful if you still need a Neurologist

1 Like

Thank you that’s very interesting.

1 Like