Vision Trouble, the Jewish New Year

[neta]

How have you handed vision problems? BTW Happy Jewish New Year. May all our dreams come true, xoxo N

[sam99a]

and happy Jewish new year to you! so far, my neuro tells me my vision problems aren't related. i doubted it when he said it, as my vision disturbances (the doctors can see my eyes moving back and forth, i have double vision, and the eye pain is ridiculous) started a few months after my walk went wonky, but after reading on here, i know he was wrong. which leaves me with the question: how do i get him to connect my vision problems with my legs? i have no idea.

as far as your actual question, i've found pressing on the most painful eye with it shut helps briefly as does something really cold over it, but it only lasts a few minutes. sometimes i can't read which is very frustrating, but i watch a show instead. i no longer drive, rest a lot, and otherwise wait for my eyes to work again. i'd been doing some eye exercises, but they did absolutely no good after ten months. i'm wondering if the eye doctor can help the neuro connect the dots since i haven't been back to the eye doctor since i received my diagnosis.

[neta in reply to sam99a]

Thanks 4 your good wishes.

I have no eye pain but I think that I have 2 problems with my visioñ---in the past very solid,agift from my mom's family. 1. my general vision has declined and 2.. my vision is often accompanied by what's called "dancing eyes" or eyes that cannot focus. So when I read, the words or sentences converge. Double vision is dealt with a prism lens in my eyeglasses but everything has to be strengthened now. I went to two eye doctors and my eyes have no disease but one eye dr said I have low convergence in my eyes. and recommend eye exercises. I also have ""downbeat nystagmus" which one cannot see. I have no idea how this is all connected. Good luck to us all.. xoxo N

[pinjem]

Very sorry to hear this. My response is only anecdotal which can be totally irrelevant. I have vision problems with ataxia, I cannot do much either. I did have a test that showed much inflammation in the cerebellum, this is probably causing all my problems (I hope, as I am convinced gluten, including oats and maize is the root cause). A layperson's understanding, but inflammation there can cause all sorts of problems in certain areas. This is not a routine test but easy to do, and took some weeks for results. After strict no gluten, my vision is , incredibly slowly, improving. Still cannot read (apart from a few sentences, at eye height, directly in front of me), and I still have all the other symptoms. If you have not had this test, ask?

[neta in reply to pinjem]

Thanks for your response and your anecdote Read my response to the previous reader/writer for an up to date picture of my vision cerebellum woes. I don't know of the test you mention but I had many tests, My gluten blood test came back as normal.xo N

[pinjem in reply to neta]

I have 'downbeat nystagmus' too, it is slowly decreasing. I still think because of gluten avoidance. You can have a gluten intolerance without it registering in the coeliac test. Mine was normal too, but it would be, I stopped ingesting gluten some weeks before, and improved within 3 days dramatically, then incredibly slowly. The test was for anti GAD, erm antibodies I think. Test for inflammation in the brain anyway. Ask? And, many neurologists are unaware of this effect gluten can have, they cannot know it all.

[neta in reply to pinjem]

I took the gad test which seemed to confirm the the hypothesis that I had auto immune mediated ataxia Addtionally,it was found that the antibody CV2 was lurking in my blood.So I took IVIG for five years---didnt help although it made my allergies disappear . Don't you need at least a stomach ache 4 gluten intolerance?

[pinjem in reply to neta]

No, but it made my hands and feet ache/hurt. (Actually very painful at its worst)I realised a while back and cut back on cheaper foods or ready made foods, I gave up bread years ago, I thought the yeast gave me migraine, now I realise it could have been the gluten. I cooked a lot myself anyway. No, I probably wasn't a coeliac, just gluten sensitive, it just showed in other ways. Still living in hope, the fact that some of my focus is improving is hopeful. Try it, carefully, for 4 days, it may help, be strict about it. Well worth at least trying?

[neta in reply to pinjem]

J have no finger or foot pain nor any stomach issues but I will happily try this anti-gluten regime.Thanks.....xoxo N

[sam99a in reply to neta]

i have coeliac and my first neuro stumbled across it, just testing for random things. before my diagnosis, i sometimes randomly vomited, but i never had stomach cramping, bloating, etc. i did have horrible pain in my finger joints. to this day, when i get glutened, my fingers hurt really badly and my foot feels like i broke something in it. also, ataxia and dystonia become much worse. it's interesting to me how often i've read about people not testing positive, but still improving once gluten free. if you try it, hope it helps!

[neta in reply to sam99a]

Your mysterious symptoms (some of them) seem really close to the previous writer'''s, so do u have gluten ataxia?? If so. its very dealable with. No?

[pinjem in reply to neta]

Re Gluten Ataxia, yes, if that is what you have, things can improve dramatically or improve somewhat, it varies from person to person but avoiding gluten will make a difference. I wanted to say to you, Neta, you probably only need to do for 4 days to see? If it makes no difference, please don't make life difficult for yourself. Every label needs looking at! I'd be interested to know, either way.

[neta in reply to pinjem]

GOIng 4 the Gluten free next week...Will advise. xoxo N

[sam99a in reply to neta]

according to the test i don't have gluten ataxia. i was just noting the correlation between glutening and worsening neurological symptoms; is that a sign of gluten ataxia? i'll have to research that. like pin, i had to go beyond gluten free. i don't even eat out anymore because the chemicals in the food give me insomnia, rashes, and worsened dystonia and ataxia. i stick to organic and i've noticed a great improvement. between my new diet and new meds, i've even been able to do some exercises recently to try to gain back some muscle strength.

[neta in reply to sam99a]

It certainly sounds like gluten ataxia. Maybe your should revisit this with an expert,,,xo N

[sam99a in reply to neta]

Thanks, will do!

[neta in reply to sam99a]

Good Luck 2 u.

[hsilverman1]

Nets,

L.Shana Tova! 🇮🇱🇮🇱from Las Vegas Ataxian!

[neta in reply to hsilverman1]

Thanx and to u too. Any joy re ataxia in Vegas? shabbat shalom xxxN