Need some help

I’m having a really hard time. It’s really bad I’m filled with alot of panic. So much u cant even sleep it keeps me awake and makes me shake. Alot. And also I have this blotch in my vision. It’s big and right there. In my central vision I think.

An ophthalmoscopic examination by the ophthalmologist of the retina is useful to r/o any macular degeneration.

I do have macular degeneration. I brought the blotch to the eye doctors attention but he didn’t really say anything about it. But I’m starting to notice it more. Do you think this is a symptom?

The symptoms you mention, definitely coincides with “Macular Degeneration”. It is uncommon to see it younger population. Lately there had been lot of advances in Macular degeneration. I would talk to other ophthalmologists if one doesn’t pay much attention.

I’m always scared to try new equipment. They might make me see better but I would be spending a lot of money and the blotch will still be there. But if there is a way to get rid of the blotch I will be excited to try.

I wish I can help you more with your vision.

Thank you but knowing that this is a symptom helps some. I was starting to think it was just me. All I can do is bring it up again to the eye doctor and hopefully maybe he can help.

Unlike you, I am open to new treatments for ataxia. That’s why I am still on my 3rd. year of BHV-4157. Especially, if it is FDA approved.
Ataxia and macular degeneration is uncommon. Only few cases were reported. If necessary, I will contact the University Of Florida and talk to a neurologist. They are supposed to be big on ataxia. An ophthalmologist are not too interested in anything outside the eyes.

I have sca7 and in 3 years into a 5 year study. Sca7 is ataxia with eye problems like macular degeneration. I bring up the blotch everytime I go to Maryland but get no help.

I hear you. SCA 7 effects in early life compared to SCA 6 I am glad that you go to Maryland and have enrolled in a study. What is it called? Who are you seeing in Maryland? And what are you taking in the study?