Weight loss : I think I figured out the technical... - Ataxia UK

Ataxia UK
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Weight loss


I think I figured out the technical difficulties. I’ve posted this question four times on this forum. My apologies. Ok so my doctor appointment is January 7th. Since my first post I’ve lost a significant amount of weight. I was 148 in May 2019. I weighed myself this morning I cannot remember exactly I think 118. I receive my results in four days but this is so crazy! What’s with ataxia and weight loss? Oh also, all my results are negative. I have a strong feeling she won’t know the cause. I appreciate any response. Thank you for your time.

22 Replies

dont know your story but most likely cause would be tremor? or not being able to swallow easily. cant anything I'm afraid but just to say your post is good and I wish you well x

Hi. I don’t know my story yet 😜January 7th is my results appointment. I was diagnosed in May 2019 since then, tests,tests,tests.

I lost a lot of weight also. I weighed 210 in JANUARY of 2018 by May of 2018 I was 140 pounds. I haven’t lost weight since then, but I haven’t gained any back either. I still have no idea what happened. I was six foot tall and very muscular. Not anymore. I exercise everyday and can now transfer to my wheelchair. Ataxia is rough, but hang in there. I have been all over the western United States and gotten no answer to what’s going on.

Thank you! Everyone in my family is so freaked out. I’m not saying I’m totally fine but I have this forum! I try to show them posts. I try to inform but it’s so difficult. I’m either a “broken record “ or they’re running around me like I’m fine china. THANK YOU! Have an awesome day. All the best! Xxx

🤔 Some people do notice seemingly drastic weight loss and wonder if it relates to their diagnosis of ataxia.

I looked for info online, googling ‘ataxia and weightloss’ and this is an extract you might find interesting.

The current data allowed us to identify 3 different groups of BMI evolution and provided evidence of an association between weight loss and disease progression. These findings suggest monitoring of body weight as a potentially useful biomarker of disease progression, because patients who had the greatest number of CAG repeats were more likely to lose weight. In addition, the results provide more information to help with patient selection and stratification for the design of interventional clinical trials.

Taken from onlinelibrary.wiley.com

in reply to wobblybee

OMG! Thank you! I never would’ve found this I’m like the dog in the movie Up....... squirrel. I LOVE this forum! Enjoy your day!

What is considered an average vs large amount of CAG repeats?

🤔 Google ‘average CAG repeats in ataxia’ and you’ll see that they can vary according to the type of ataxia.

Polyglutamine (polyQ) diseases are caused by coding expanded (CAG)n repeats in the respective genes.1 Repeat instability, both germ line and somatic, is known to occur in most polyQ diseases and can influence the phenotype. Longer repeats are usually associated with earlier ages at onset (AAO) and/or more severe disease courses. Repeat instability with expansion bias can have severe clinical consequences to patients with these devastating conditions for which there are no disease-modifying treatments available. Several factors, including the size of the repeats (longer repeats are more unstable), and the presence of sequence interruptions (pure repeats are more unstable) are known to have an influence.2

An extract from jnnp.bmj.com

in reply to wobblybee

May I ask how long have you had ataxia? You’re so knowledgeable.

in reply to Jessie70

🙂 I’ve had symptoms since the 1990s, but only got a diagnosis in 2011.

in reply to wobblybee

I’ve been misdiagnosed for years! Actually considered a back surgery. I have an MRI from an injury four years ago and you can see a blob on the image. I thought that’s odd but nobody said anything. I didn’t ask. I was dealing with an injury. Hindsight is 20/20 no kidding! Happy New Year 😜 I really believed I was a graceless klutz. I was a runner. Broken double digit bones. Titanium in my right leg from missing the arm of the sofa and hitting the metal in my leg from a previous break (ran into the back door from a run tripped over shoes:I cannot remember exactly maybe 8 years ago. ?) I had to have surgery. Compound fracture. Yes. I broke my leg on my wood floor. 🙄 As I posted b/4 I was diagnosed in May and have been doing every test my neurologist orders. No order for an MRI. I’m guessing that’s another test in the future? Will my doctor be able to estimate how long I’ve had ataxia? Thank you for your time.


I’ve gained loads of weight because I can’t exercise

I have also put weight on due to medication and my mobility 😔

I’m sorry. This diagnosis is the pits.

My husband has the same problem. He is 6ft2 and now weights only 63kg. He is on a diet of over 3500/4000 calories and still finds it difficult to maintain his weight. He was ill over Christmas and lost 3kg in a week and despite the high number of calories being consumed again, he cannot seem to put the weight back on.

His Consultant - Dr Giunti, says that she does not usually see cases with such dramatic weight loss. My husband's sister also has the condition and has the same problem maintaining her weight.

Whilst ill, I used the high calorie drinks (330 per200ml bottle) available on prescription to boost the number of calories with minimum effort consuming then. They are called Ensure plus advance.

We are advised by a dietician on how to boost calorie intake.

I suggest you go back to your GP and discuss with your Consultant if you should also go down this route.

Good luck.

Thomas's London.

Thank you so much for your reply. Maybe that’s why I’m ok with finally having a diagnosis, albeit ataxia is one trippy disease.

I wouldn’t t rule out the effect of stress too on weight loss (and paradoxically, weight gain...)

That’s a good thought but I’m really not stressed. I’m bored. I worked full time then went 1/2 days. As of Thanksgiving break I didn’t go back. I’m a sign language interpreter, well I was, in an educational setting. How embarrassing on all my grammatical errors. Ack!


in reply to swtb

Hi. Thank you for your reply. I’m going to have all my information on January 7th. My husband is impressed with this neurologist. ( maybe I’m jealous 😜) I know this sounds nuts but I know the reason and I know she won’t but we shall see. I tend to be cocky about my health. I’ve been shoved around the medical field for years. I treat myself. I’M NOT ADVOCATING THIS IN ANYWAY because maybe just maybe, I don’t know I regret not asking about something I saw on an image. In my defense I have zero medical training. I’ve interpreted in medical settings. I’m familiar with the vernacular. I’ve looked at excited expecting mother’s showing me their sonograms. Wow they’ve come a long way! Sometimes common sense is best. Sadly lacking much in that department worldwide. I’m watching a lot of tv.

Good luck...I weight a pathetic 55lbs a few months ago and the dietician weighed me last week...48lbs...

it’s nonsense - I can barely walk or exercise and I should by shares in Ben and Jerry’s ...go figure

and if u find out anything let us know

I posted my results. Nothing helpful. I’ll always post anything I learn. 💞

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