SCA Type 6 & CBD oil: Hi.... I have... - Ataxia UK

Ataxia UK
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SCA Type 6 & CBD oil

Magicalwomanz
Magicalwomanz

Hi.... I have Spinocerebellar Type 6 heredited from my biological mother.... I am looking for anyone that has same condition ideally same type also so can maybe ask questions as not many people have my condition and type... I think my one is one of the rarest but latest to onset... 1 in 100,000 people in the world have my type and less than 2% are in the UK so be great to get in touch with anyone, wherever they are... also CBD oil will be available on NHs shortly for anyone with a form of Ataxia so going to my doctors a shave taken oil and smoked cannabis (someone gave to me to try for pains and worked) and found this to be the best medicine especially as I get older and conditions start to play up more. The CBD oil will replace the cannabis smoking as want to quit but can’t as oil so much more. Anyone else with similar experiences be great to hear from... thanks

19 Replies
oldestnewest

I have sca6 heredity from my late Father all his living siblings also have it ,though I got symptons earlier than he did I was in my late 40s 48 to be precise but did not get diagnoised until a month before my 50th birthday I now use wheelchair for getting around outside I try to keep positive and have recently started back swimming which helps muscles only meds I take are inhalers for my asthma and omneprazole for stomach .How long have you sca6 their are quite a few have it on this site but symtons can still vary between people .keep positive Linda

Magicalwomanz
Magicalwomanz
in reply to gossy

Many thanks for reply... yep I got it from my biological mother and was diagnosed in my late 20s.... I have few signs at moment but nothing major... it’s mainly my balance a little and my speech sometimes but again no major or really noticeable by others yet.... but I ache a lot which I find cbd helps that a lot as only thing that really does... I also get pregabs but they make me feel worse the next day after taken them making me feel tipsy and sick so don’t really agree with me.... we r Def a rare kind as not many in the uk have sca type 6 well the genetic one but also been told this is one of the better ones to get as doesn’t shorten life expectancy and. Doesn’t really happen till later in life BUT can happen early still... thanks for your message x

Hi, Did you mean you inherited this disorder from your adoptive mother because you can only get this disorder from biological parents, sorry if I am reading this wrong. I was tested for SCA6 but I did not have this and I still do not have a definite diagnosis.

All the best

Suzie

Sorry meant biological lol opps hahahha will amend this my mistake lol x

Hidden
Hidden

My mother has it and I will get it too. I am relatively ok at the moment but occassionally get balance issues and have found recently that my speech is a bit ‘off’. My mother is 84 and I am 58.

Magicalwomanz
Magicalwomanz
in reply to Hidden

Have you been tested then for specific Ava type 6... I was thinking as it’s that rare maybe many people who have it in the UK are related but not so Sure now as seems a few have it thought most would have been in same bloodline somewhere lol.... I like to think we r the special/chosen ones lol x

Hidden
Hidden
in reply to Magicalwomanz

Yes, I had testing. My brothers haven’t. Their choice at the end of the day. My mums cousin had it too. Don’t know about any others from the family because of their parents deaths. My consultant has only ever seen one other case of SCA6 in his career.

Magicalwomanz
Magicalwomanz
in reply to Hidden

Yep so as said earlier to other pistbas someone said it wasn’t rare IT IS lol said Ava in previous post meant SCA lol bloody autocorrect.... so u Def got it then..... we r one of a kind that’s for sure lol x well 1 in 100,000 in work have got it of the worlds population xx

I have SCA6 and I inherited it from my mother. I have identical twin daughters who were tested and they have it also, but not serious symptoms yet. They are in their 30s. My mother’s heritage is England. I wonder how many people with SCA6 have history connected to Britain.

Sorry, I forgot to mention that I live in Ontario, Canada.

Many thanks for that.... yes there are not that many with SCA Type 6 in the UK I know that much.... also I’m joined to the ataxia penpal society and lists some others there.... we r Def one of a few lol x

Yep I have 2 brothers by biological mum and it’s that side I got it from but they have also refused testing my sister (half also on bio mums side) was tested but didn’t have it luckily x

All the inherited SCA's are rare with an occurrence around 1-2 per 100,000. The important question is what are you doing to try and help yourselves.

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SCA6 is like many of the other inherited SCA's in that it belongs to a class of disorders known as Polyglutamine disorders. That means that at the heart of your disease is a mutant protein that your body produces. The protein is part of your bodies normal cellular processes, but because you have a slight variation in your genetic code the protein that your body makes is not right. It does the job it's supposed to, but normally when such proteins complete their job the brain clears out the used protein. In the case of some SCA's the protein does it's job, but it also is too big and so it hangs around and ends up killing surrounding cells. It hangs around because it does something scientists call "mis-folding". There is an enormous amount of ongoing research into finding drugs that can attach to these bad proteins and clean them out before they cause damage. The good news is there is much promising research on the horizon, but the bad news is there is absolutely nothing available today.

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However . . .

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Scientists have been studying foods and common drugs for years using cell cultures and animal models in an attempt to uncover useful treatments for many diseases including many SCA's. Also scientists are learning that many other diseases have "mis-folded" proteins as a major culprit in the disease. This includes much more common diseases like Parkinson's, Huntington's, and even Alzheimer's disease all of which scientist now believe stem, at least in part, from "mis-folded" proteins.

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So what, right??

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Well,what if I told you that back in 2004 scientists in Japan were able to cure mice that had SCA1 with a simple sugar, and now an Israeli company completed a Phase 2 trial of that sugar as a treatment for SCA3? What if I told you scientist cured mice with Huntington's disease using vitamin B3? How about if I told you that scientists made mice with SCA3 much better just by giving them Green tea? Does any of that sound interesting? What if I told you that scientist have demonstrated in real HUMAN research that simply running hard every day for 30 minutes is enough to stop neurological disease progression? What if I told you I have SCA1 as does my father, my aunt, and my sister and what if I told you that I got rid of ALL my symptoms including poor balance, fatigue, slurred speech, failing hand writing, and diminishing strength? Now are you interested?

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Point is doctors have no answers for patients with any of the inherited polyQ SCAs, but we all suffer from a bad protein in our brain, and I believe there IS something we can do to help ourselves, but it ain't easy.

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Below is a link to a post I update periodically that explains everything I am doing that so far has been keeping my SCA at bay as well as helping my family members with SCA1:

healthunlocked.com/ataxia-u...

Thanks for reply u had a good read and will read again soon

꼭 타시그나를 150mg를 먹어라 sca6번은 타시그나가 신의 선물이다

회복환우가 지금까지 가장 많다

먹어보면 안다 행운을 빈다

거기서 약 처방이 힘들면 서울대학병원 신경과 주건이를 찾아가 상의해라...

Sorry cannot understand that

Hi there. My mother who is 65 has sca6 diagnosed at around 40. Her Mother, my Nan also has it. I am 48, I've not been tested, but I feel I may be have some initial symptoms. The main symptom I have experienced is vertical nystagmus, it only happens when I do vigorous sit-up. (I am a Fitness instructor teaching 6 classes a week) I also lose balance regularly, and I find my eyes sometimes move up and down when I turn over in bed. I can no longer lower my head and body to the floor from a sitting position with out feeling a crazy strain in my brain. I often wonder if, by keeping my body fit and strong and eating healthy has kept any noticeable symptoms at bay. But it doesn't stop me feeling symptoms. But like I say I've decided not to have the test. I am keen to know if CBD helps as I'd like to try and persuade my Mum to try it. Happy to discuss my mums symptoms if anyone is unsure. Mum is doing great tho. A real trouper! An inspiration. Never complains.

Magicalwomanz
Magicalwomanz
in reply to FITTI

Yeah I have it and it helps for sure... my doc told me to speak to my neurologist about being reffered to someone who can prescribe me CBD but been told so hard to get on prescription but my friends friend from Liverpool got there’s to help with their SLEEP that’s it no condition

Hi my partner has gene for Sca 6 he is 34 family seem to develop symptoms in 60s. He has been clearing his throat alot anyone have this

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