Sca unknown

[Rezzy3]

What’s more annoying, knowing you have sca or not knowing which one you have?

[HarryB Administrator]

Hi Rezzy3

Thank you for your question.

I am sure if you asked 100 people this question you would get 100 different answers! Everyone’s view is different and there is no right or wrong answer.

I have had an idiopathic (unknown cause) Cerebellar Ataxia for over 25 years. I have had numerous tests over the years to try and find the cause but to no avail. I do continue to have tests but finding out the cause is no longer a priority in my life. I know whatever the cause is there is no treatment or cure available yet so managing my physical symptoms on a day to day basis and keeping my mental health good are my priorities.

I must stress this is my personal view for me.

Best wishes

Harriet

[Veteran250 in reply to HarryB]

Hi Rezzy and welcome to our Ataxia community....... you will find there are many members in this community who post on a regular basis, any questions, ask away, I’m sure you will get an answer from someone. 😀👍

[Rezzy3 in reply to Veteran250]

Wow. And all of you are quick to respond. I always turn off all notifications on my devices... but not for this site. I can’t put this down!

[Rezzy3 in reply to HarryB]

You and I appear to be in the same mindset but you have a 25 year head start. Don’t know the cause, and if I did, there’s still no cure. Or is there??

Sunvox is definitely on a promising path.

I just started this week putting away all my medication and supplements and trying a hard reset by fasting. It was unintentional as I was scheduled for bloodwork and decided to keep fasting. I’ve finally felt my world stop spinning, literally. I’ve already realized that eggs trigger my symptoms really quick. Now I just can’t decide what type of fasting works best. I did 36 hours then 16hours then 24 hours. But still averaged one meal a day no carbs or sugars. Broke down today and had two shortbread cookies with green tea. A treat to myself for the breakthrough but it might set me back. It’s been about 4years since I felt at least moderately stable.

Thanks for your honest feedback.

[pinjem in reply to Rezzy3]

That is interesting, two thoughts (apart from I must try this) I'm susceptible to extreme mood swings if I don't eat regularly - so I eat regularly at all times, I wonder if this might be OK if I knew it was likely to happen, and did you shake whilst not eating? I am concerned I might stress my body too much though I am healthy apart from the ataxia. I cannot eat certain foods without the drunken feelings starting within 12 hours. This especially would mean any gluten at all, or many similar proteins. Just mentioning, in case you haven't tried cutting gluten out of your diet before?

[Rezzy3 in reply to pinjem]

Hello pinjem, I have not gotten the shakes during fasting only because I put a pinch of Redmond salt in about 20oz of water. I think I consumed over 80oz in a 36hour fast. I find fasting is a good way for me to isolate which foods trigger symptoms. I love eggs more than anything so when that caused me to have the drunken feeling, that was hard to take.

I think I found the tip about salt in the health and nutrition forum by accident.

Everyone person I’ve read on here is willing to try anything once and I believe we are more in tune with our bodies than the average person.

Let me know the results if you decide to try fasting. Once you get over the hump of mental hunger it actually gets really easy.

[pinjem in reply to Rezzy3]

Thank you! I think we can get it here, if not I think we can get very similar. I'll be looking for a day when I am not with anyone! A day I can lounge around in the garden.

[suzie44na in reply to Rezzy3]

I think foods can be triggers in movement disorders. I have a gene variant in PNKD which doctors do not think is causing my problems. In PNKD the body does not get rid of methylglyoxal properly, so causes problems. Chocolate, tea, coffee and honey all contain methyglyoxal so must avoid.

Suzie

[ConfusedAtaxian in reply to HarryB]

I have had late onset Idiopathic CA for 4 years and was signed off in Nov 17. No tests, nothing. Not even told about it - I had to look it up. What a scare! It has progressed rapidly. Like you say there is no treatment nor cure so all we can do is carry on and manage our well-being on a daily basis as well as smile. Best wishes. 🤗

[Rezzy3 in reply to ConfusedAtaxian]

All we can do is move forward ConfusedAtaxian, albeit just a little more cautious.

My physical therapist noticed my condition while doing rehab for a torn acl a few months back. And now that I know I have it, I don’t know where it came from. This forum is the best.

Positive vibes to you!

[suzie44na]

Hi Rezzy3, I would say not knowing. I still do not have a definite diagnosis after 23 years of waiting, most annoying. I am one of those people who like to know what my problem is caused by, not knowing just causes me stress always.

Suzie

[Rezzy3 in reply to suzie44na]

Hello suzie44na, and then if we ever do find out, another stress level takes over on how to deal with it. I noticed that the positivity of the people in this group so finding you and everyone here put me closer to a mental cure.

Best wishes.

[Veteran250 in reply to Rezzy3]

Hello Suzie...... go on Google search and type in...... Types of Ataxia and you will find a list of Ataxia and related symptoms..... hope this helps. 😀

[suzie44na in reply to Veteran250]

Thank you

[KiwiBob]

I would like to know.

[Litty]

As Harriet says it is very individual!

Testing is HORRIBLE for the whole family and it is so hard telling your kids that they may have inherited off you. (if you decide to).

I have SCA1 and my dad was one of the first people to be tested back in1995. I caught it from Dad and my 2 grew-up knowing they have a 50% of inheriting off me. Luckily my son was tested last year and does not have it but my daughter is the middle of her test at the moment. So hard for everyone.

You need to decide what is right for you if you know what sort you have x

[Rezzy3 in reply to Litty]

Hello Litty, it is definitely tough and very individual. Funny how everything I’ve experienced thus far, someone has mentioned in a response as a past or even recent experience. I am now on the fence about telling my 3 kids. My oldest knows but not to any significant extent. I guess I’ll know when the time is right. Stay strong. Stay positive.

[billiecorton]

Last issue of Ataxia UK carried a report that UCL London have recently identified a fault on gene RFC1 as responsible for many cases of late onset ataxia previously termed idiopathic. syndrome called CANVAS, is transmitted recessively but fairly widespread in population. More research needed..

[KiwiBob]

They now think my dad my of had Ataxia. He has passed away so can’t be tested. His Brother my uncle (76 years old) is Waiting to be tested for Ataxia and he thinks his sisters my Aunties (there in there nineties) my have Ataxia too.

I would like know so my kids can be tested. If they are going to get this they can plan and do things now and not miss out on doing things later.