Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,032 members • 4,570 posts

All posts for May 2022

Drugs

Has anybody been prescribed muscle relaxing medication and did it work? My right leg is as stiff as a board and has been for weeks ☹️.

Has anybody been prescribed muscle relaxing medication and did it work? My right...

•2 years ago

Genetic testing

As any one had genetic test done and what it consit of just blood tests ?

As any one had genetic test done and what it consit of just blood tests ?

•2 years ago

Indoor Walker/Rollator

Good Day Peeps, I am looking for advice, recommendations on the above. I use a Drive Rollator which I keep in the car and a Tectronic for ‘off road’. My...

Good Day Peeps, I am looking for advice, recommendations on the above. I use a D...

•2 years ago

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pedal exercises and ataxia

I believe that pedal exercises can increase coordination, which is good for recovery from ataxia. Maybe it works for me and you might want to try it too....

I believe that pedal exercises can increase coordination, which is good for reco...

•2 years ago

Cerebellar Cognitive Affective Syndrome

I have 'Cerebellar Cognitive Affective Syndrome' as symptoms attached to my diagnosed 'Cerebellar Ataxia'. I am willing to share my experiences with anyone who...

I have 'Cerebellar Cognitive Affective Syndrome' as symptoms attached to my diag...

•2 years ago

Coffee

Coffee. Is Coffee bad for you, I drink it thinking it will give me more energy, perhaps I’m wrong

Coffee. Is Coffee bad for you, I drink it thinking it will give me more energy,...

•2 years ago

Coenzyme Q10 and Spinocerebellar Ataxias

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4674072/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4674072/

•2 years ago

Oral trehalose maybe helpful for patients with spinocerebellar ataxia 3 and should be better evaluated

This is a research report on the treatment of spinal ataxia with oral seaweed sugar....

This is a research report on the treatment of spinal ataxia with oral seaweed su...

•2 years ago

Phase II/III trial of troriluzole in spinocerebellar ataxia

Melissa Beiner, MD, Biohaven Pharmaceuticals, Inc., New Haven, CT, discusses the findings of a Phase II/III clinical trial (NCT02960893) of troriluzole in...

Melissa Beiner, MD, Biohaven Pharmaceuticals, Inc., New Haven, CT, discusses the...

•2 years ago

Recommendations on a portable mobility scooter/trike

That can carry crutches as well, something that works with our balance issues. And I can travel via plane with.

That can carry crutches as well, something that works with our balance issues. A...

•2 years ago

USA group information???

Anyone know USA ataxia group???

Anyone know USA ataxia group???

•2 years ago

New Yankee to community

It’s been 2 years battling this beast🥵 6 months ago new neurologist put me on bi-weekly b-12 shots and has made HUGE improvement in lifestyle. Still get...

It’s been 2 years battling this beast🥵 6 months ago new neurologist put me on b...

•2 years ago

Rare Revolution Magazine are recruiting! 📢

Calling out to all siblings with a rare disease, aged 8-25, for a virtual research project to understand the impact on siblings of people with a rare disease -...

Calling out to all siblings with a rare disease, aged 8-25, for a virtual resear...

•2 years ago

Sleep apnea

Hi friends I was recently diagnosed with CA and was wondering if anyone new if sleep apnea might be linked?

Hi friends I was recently diagnosed with CA and was wondering if anyone new if s...

•2 years ago

CBD for SCA

I have been testing half a year now with CBD-oil. Normally I've been using 20-25% but now I bought Cibdol's 40%, no exprience yet. Get's a bit costly... For my...

I have been testing half a year now with CBD-oil. Normally I've been using 20-25...

•2 years ago

TRH Analogue Talterin

I'm 55y male from Helsinki w SCA-7/43 repet Just found out that in Japan there is a medicine called TRH Analogue Talterin which is developed for the lack of...

I'm 55y male from Helsinki w SCA-7/43 repet Just found out that in Japan there...

•2 years ago

Heart Ablation improves balance

Hi Guys, Had Astra Zenica Vaccination, ended up in hospital with Atrial Fibrillation. Had to do the paddles on the chest to get back into rythm. 3 months later...

Hi Guys, Had Astra Zenica Vaccination, ended up in hospital with Atrial Fibrilla...

•2 years ago

I have seen some protocols in the literature for the treatment of SCA with buspirone.

I have seen some protocols in some Chinese literature for the treatment of SCA with buspirone. Buspirone: (Increase to 5mg twice a day in week 2 and up to 10mg...

I have seen some protocols in some Chinese literature for the treatment of SCA w...

•2 years ago

Drinking alcohol

I am new to ataxia. Does anyone else suffer when drinking alcohol I can drink a glass of wine and not feel too bad but other times I feel like I have had 10...

I am new to ataxia. Does anyone else suffer when drinking alcohol I can drink a ...

•2 years ago

l am a newcomer, and i want to know all about SCA2、ataxia and tartarine.

我来自中国，于 2021 年 8 月被诊断出患有 SCA2-43。我一直在按照 Joe Peck 先生的建议进行锻炼和服用补充剂。现在病情没有明显进展。我想听听您对丁螺环酮和酒石（一种于 2000 年在日本注册的用于治疗共济失调的药物）的看法。有关欧洲地区 SCA 的最新更新？

我来自中国，于 2021 年 8 月被诊断出患有 SCA2-43。我一直在按照 Joe Peck 先生的建议进行锻炼和服用补充剂。现在病情没有明显进展。我想听听...

•2 years ago

Condolences

Dear Ian I was so sorry to hear of Litty's passing and send my condolences. I often used to see her posts and comments on here. I lost my husband, who had...

Dear Ian I was so sorry to hear of Litty's passing and send my condolences. I o...

•2 years ago

energy varies greatly from day to day

I was diagnosed with Spinal Cerebellar Ataxia type 6 about a year ago. Among other things, my energy varies greatly. Yesterday I felt almost normal - speech...

I was diagnosed with Spinal Cerebellar Ataxia type 6 about a year ago. Among ot...

•2 years ago

heartburn

Does anybody here suffer from heartburn? With me it suddenly started 2 days ago. I looked the symptoms up on google(disliked by the medical profession) but...

Does anybody here suffer from heartburn? With me it suddenly started 2 days ago....

•2 years ago

Appalling Outpatients Appointment

I want to share the awful treatment I had at my appointment with the Neurology consultant at my local hospital last week. At little background to it - I had...

I want to share the awful treatment I had at my appointment with the Neurology c...

•2 years ago

Sad news from Litty's husband

This is Ian, Litty's husband here. I am very sorry to tell you that Litty sadly passed away on Tuesday this week (10/5/22). She was at home, very peaceful and...

This is Ian, Litty's husband here. I am very sorry to tell you that Litty sadly ...

•2 years ago

New country

I’m looking at moving to a new country that never gets to hot, to cold and only rains between 2 and 4 am. Everything is dirt cheap and everybody is super...

I’m looking at moving to a new country that never gets to hot, to cold and only ...

•2 years ago

Y𝐎𝐔 A𝐑𝐄 I𝐍𝐕𝐈𝐓𝐄𝐃 T𝐎 T𝐇𝐄 S𝐂𝐎𝐓𝐓𝐈𝐒𝐇 C𝐎𝐍𝐅𝐄𝐑𝐄𝐍𝐂𝐄 O𝐍 𝟏𝟖 J𝐔𝐍𝐄 𝟐𝟎𝟐𝟐! 📢

The Scottish Conference will take place on 18 June from 10:30 am - 4:45 pm at Leonardo Hotel, Murrayfield, Edinburgh. Get your tickets now! Link in our bio!...

The Scottish Conference will take place on 18 June from 10:30 am - 4:45 pm at L...

•2 years ago

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Speech

Has anybody got any tips yo help with speech problem thankyou

Has anybody got any tips yo help with speech problem thankyou

•2 years ago

Do you have views on newborn genetic testing for the ataxias?

Do you have views on whether it's right to test for conditions that don't have cures, such as the ataxias? It's quite contraversial among some ataxia...

Do you have views on whether it's right to test for conditions that don't have c...

Partner•2 years ago

does weather affect you ataxia ?

My Ataxia symptoms - dizziness, speech, balance - get worse with cold or damp weather - much bettter when warm and dry. Does that happen to anyone else?

My Ataxia symptoms - dizziness, speech, balance - get worse with cold or damp we...

•2 years ago

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