FA

[Jennax]

Hello, I haven’t posted much. I was wondering if anyone could suggest any vitamins that would help with the ataxia symptoms? TIA

[Cuds]

Hiya! What symptoms in particular are you looking to address? Are you under a neurologist at the moment?

[Jennax in reply to Cuds]

Hello, thanks for the reply! Yeah I am, he told me to ask for ideas - I’m mainly struggling with the fatigue... sometimes I feel too tired that I start getting in more pain, just a vicious cycle!

[Piero in reply to Jennax]

I haven't come across anything which eases the fatigue other than putting my feet up and occasionally a nap. I am seventy-six however so that fact must contribute to my decreasing reservoir of energy. If you do unearth anything which lessens the degree of tiredness I'd be delighted to hear of it, so would many others I guess.

[Jennax in reply to Piero]

I never seem to have any energy, i think I’ll have to try to add time for naps during the day instead then. Thank you Piero for the reply.

[Cuds]

Hi - I have found that my fatigue is helped by taking CoQ10. I have tried with and without it and notice difference. I used to buy it myself but now have it prescribed by the clinic at UCL so ask your neurologist for it....then you can be sure of the quality and dosage. I take a prescribed dose of 200mg 3 times a day.

Hope this helps you and your doctor.

Carol

[Jennax in reply to Cuds]

Thank you so much, Carol! I’ll be sure to ask my neurologist about that. Do you also have FA?

[Cuds in reply to Jennax]

Yes...I was diagnosed with it 3 years after my younger brother...he was 37 and I was 43. 12 years living with it now so some experience gained with coping strategies. Good luck with your doc. If they are struggling with treatments for you then downĺoad the clinical guidelines from ataxia UK website and pass them on 👍

[Jennax]

Ah, my brother had it too. If you don’t mind me asking, what coping strategies do you have?

Thank you, I will do!

[Cuds in reply to Jennax]

I plan well! If I am going to have a busy day I make sure I have a rest day after. I make sure I keep moving every day. I found aqua aerobics helped my core which helped.my walking. I use 1 stick when out and about to help my balance and it also makes people walk around you.

I try to eat good food (not processed like microwave stuff) and eat antioxidant fruit and veg. Making a smoothie everyday is a good way to het the vitamins in!

Hope this helps? Take care!

[Jennax in reply to Cuds]

Ah thank you! I use a wheelchair when I go outside but recently I was given a walker for inside the house. Unfortunately my balance is awful that there’s no chance I could use a stick, however I totally agree with keeping yourself moving!! I think I’m going to have to also plan rest days too.

Thanks again, take care. Feel free to message me whenever!

[february]

I don''t have FA, as my ataxia is due to Niemann Pick C disease. Anyway, I take 300 mg twice a day of CoQ10. I've taken it for years, per my neurologists advice, and it seems to help me a bit with fatigue. Please check with your neurologist to see if he/she would recommend it for you. I buy it over the counter, as it's considered a supplement, I believe...,my best to you..., ;o)

[Jennax in reply to february]

Thank you. Yeah, I’ll mention it to him!! I’m gonna buy some first because I don’t see my neurologist until a few more months. My best to you too!

[Cuds in reply to Jennax]

If you are going to buy it get it from natures best on the internet. It is the strongest dose per capsule for commercial purchase!

[swtb]

Hi Jennax! Please click on Sunvox on this site. He has posted everything he takes and does to completely stop his symptoms with SCA 1. He has linked all of his supplements and exercises with evidense-based scientific research, which you can click on to read for yourself. He is a very caring ataxian, who has volunteered this information to help us all. It might help to know that he is a graduate of Dartmouth, with an honorary degree in chemistry.

[Jennax in reply to swtb]

Ooh, thank you. I’ll look now!

[simon111]

Hi Jennax

My 16 year old son has friedrichs ataxia He was diagnosed 4 years ago.

I am on a parents group,worldwide,where I get a lot of advice .Simon's energy is brilliant,he used to get very fatigued. I definitely recommend COQ10

COQ10 300mg x4...Thiamine 300mg x9

Per day.

I get Thiamine,pharmaceutical strength sent to me from Spain,it can be bought over the counter. Here in uk it has to be prescribed. It helps his tremors immensely. I will try to send you a link to a group you can join,by downloading an app called Telegram

A lot of people are taking Etravirine,a hiv drug that shows promise for fa.

There is trials going on at moment to use for fa.

Simon's neurologist is taking it before her board to hopefully obtaining permission to try for simon

[Jennax in reply to simon111]

Thank you so much. I’ve bought some COQ10 capsules however I believe it’s not that much of a dose to help with my fatigue. I’m definitely going to ask my neurologist about prescribing me it; I’m only 20 and I feel like I should have more energy than I actually have.. especially to keep up with the things I’d like to do.

If you don’t mind me asking, does your son have a support group that he can go to?

[simon111 in reply to Jennax]

facebook.com/andy.garciaalv...

[e-mail]

There is the contact details for Facebook group..check it out hopefully help you

[Shehryaar in reply to simon111]

Hi what is the name of the worldwide parents group that u gt advice for FA

[simon111]

ncbi.nlm.nih.gov/m/pubmed/3...

[simon111]

friedreichsataxianews.com/f...

[simon111]

t.me/joinchat/J682xhFAMTiMp...

[simon111]

No he hasn't but I know there is a Facebook for young FA sufferers

I will ask I'm parents group about it

[Jennax in reply to simon111]

Ah okay! Yeah I’m also in the 16-30 group on Facebook unfortunately not that many people post

[simon111]

friedreichsataxianews.com/f...

Explorer this site ...it's Friedrich ataxia..adults and under 20