I don’t know. But for some reason China is in my head.
I was misdiagnosed, and suffered the consequences for many years. Fortunately research has moved on considerably, but errors still occur, testing can often be a long drawn out procedure that hits a brick wall.
Ataxia can be very tricky to diagnose correctly, there are many many types, and several causes that are simply not genetic, even experts can be puzzled at times.
Neurological symptoms can be similar in many conditions, and even appear to ‘overlap’. It would be a big step forward if all genetic Ataxias could be diagnosed by a blood test, but we know that currently that’s just not possible. Despite many types having been identified, not all have reached the stage of ‘patient testing’. Plus, new types and variants are being found quite often, which complicates diagnosis even further.
What is known, not everybody diagnosed with a specific type will go on to progress exactly in the same way as other relatives. Not everybody conforms exactly to symptoms expected of specific types. But there will be exceptions depending on the exact type of ataxia.
xB
I’m very interested in this thread. I had my 23 and me done years ago and was just diagnosed with ataxia three weeks ago. I did research to find a bunch of genes related to ataxia and then I looked at my 23 and me raw data to see if I had pathogenic variants in any of those genes (this took days, I do not recommend it for the faint-hearted or those new to research…just because you have a pathogenic variant, doesn’t mean you’ll develop a disease). Anyway, I have a freaking BOATLOAD of pathogenic variants on a bunch of genes implicated in ataxia! I’ve sent the info on to my neurologist and we’ll see how he’d like to follow-up.
I’m optimistic that knowing the gene(s) involved gives us more information from which to approach treatment. For example, I have 30 pathogenic variants on the SLC2A1 gene which might mean I have this crazy thing called GLUT1 deficiency syndrome…which might improve if I follow the medical ketogenic diet. I’m looking forward to learning if all this genetic information actually makes a difference in the disease course.
Years ago, I tried the Ketogenic Diet ( I’m not diagnosed with Glut1 deficiency, it was for misdiagnosed Epilepsy). Personally, I found it excessively difficult to follow, and couldn’t maintain it, but lots of people do manage it.
xB
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The diet looks insanely difficult. But, if it might help, I’ll make it work…there’s no way I’m trying it, though, until that diagnosis is confirmed! Right now, my integrative MD has me on a low oxalate diet because my mitochondrial markers (succinic, fumaric, malic, and citric acid) are off the charts high. No chocolate, nuts, or potatoes and most plant-based food is off the list…but I can fry up all the chicken I want, so there’s a plus side to everything I guess 
Anyone else have any luck with special diets? My brother and sister have celiac and I get a rash from eggs and tummy upset from dairy so I’ve been gluten, dairy, and egg-free for over a decade. I’ve only been on the low oxalate diet for a few weeks and I don’t feel any better. My biochemist husband says I need to give it a few months.
I have a thought if you don’t mind me saying it. Most fats in chicken or poultry for that fact is found in the skin. So if you want to reduce your fat intake, cook all chicken breasts without the skin. Just something I learned over the years. 
EDIT: Regarding the gluten-free diet problem. Another big thing you must do is to drink at least 8 glasses of water a day. WATER, not coffee or soda [seltzer is OK].
This should also help with a constipation problem if it occurs.
There are about 40% people with Hereditary SCA that will have gluten intolerance. Although there are studies on “gluten Ataxia”, the normal blood tests for celiac disease will not diagnose it. Instead of the gut, the antibodies are directed toward the cerebellum. If you are interested you can read the articles by Dr. Hadjivassilio from Sheffield, UK on “Tranglutaminase 6 antibodies in the Dx. of Gluten Ataxia”. Me and my sister are on gluten free diet. Although there is not so much improvement on ataxia, we have noticed a dramatic improvement on skin rash (Dermatitis Herpetiformis) from gluten.
Thank you for your post. Actually, if I have to do the ketogenic diet, I have to get most of my calories from fat! So, I’d need extra chicken skin! Maybe a silver lining?
You are right about the water. I also have small fiber neuropathy and POTS and have been heavy loading electrolyte water all day long (3+ liters/day) for over a year. The constipation, which I’ve had since adolescence (I’m 50 now), is currently managed with magnesium oxide twice a day (the other forms of magnesium did not do the trick).
I will definitely read up on gluten ataxia, thanks! The GF diet also resolved my lifelong challenge with rashes/eczema and also migraines and joint pain. Unfortunately, since I’ve been GF for so long, we can’t test for the TG6 antibodies…those diminish or disappear completely with the GF diet. Because my sister and brother both tested positive for celiac and because I had dramatic improvements on the GF diet, we are assuming I have celiac. Other than staying GF, I don’t think this changes treatment options…
My answer is You have to do what you have to do! I assume you are talking about Magnesium Citrate.
Magnesium citrate does work but I find that magnesium oxide works better.
I understand. FYI, Mag Cit is easier on the stomach. But if the other works ok then fine.
I was on a strict GF diet for a year or two and did very well. I was able to run again, with practice, so I was jogging regularly with my dog. I still had regular symptoms, but I was able to manage them with naps and moving my schedule around to allow for rest.
BUT, during this time I was separated, not dating, living alone, no kids, no job, and only going to grad school. And the combination of the diet and running made me at least 30 lbs less than usual. So I’m not sure what was making me do so much better.