I am new here and newly diagnosed. I am friends with Firefly & Baxter. Will post an introduction post SOON! Having so much trouble SEEING!!

I need HELP! I just got diagnoses with DYS and have not been clasified as to POTS or whatever yet. Go back to cardio in a week.

Anyway, I am 36 and have had posterior cataracts for about 3 years that have been fast paced progressing in size to what now the eye MD calls 'smoldering' lol. Although he still says that the removal surgery can wait for a while. ALSO, within the last 2 WEEKS or so, my pupils stay HUGE!! The eye dr is not concerned, but HE is NOT the one that CANNOT see, that would be uhhhh, ME!!
I wear contacts, NO ONE can fit me for glasses. Strange, but true. Been thru 3 states, no glasses for me. Current rx for contacts, but it's like my eyes don't want to focus. When I take the contacts out (blind of course) they can focus, weird. (?) I can't deal with this! What is going on??
I am looking for an eye specialist in DYS. I am in Auburn, AL. PLEASE can anyone HELP?? What is happening to me? I have read (when I can see for 5 mins) that hydration helps this some. I am drinking like crazy today to NO avail.

Sorry, I just wrote a book. Awaiting an answer. THANKS!!

~StrokeChick

Rosie,
Thanks for replying! YES, I can have salt! I have a very low BP. Strokes are from an unknown cause that began while I was in-utero!!!!!
I am only 36. lol Way too young for all that I have.
I have to wear sunglasses.
I have to get my eyes FIXED soon!! This is miserable!!

Any other ideas, PLEASE toss them my way. I need to find a specialist too!

Thanks!

Oh! and the sleep study.....haven't had one yet, but NEED one soon. Neurologist wants it done soon. I do have tremors at night. I am on Zonegran for that.

quote:

Originally posted by Rosie:
Hi StrokeChick and welcome to NDRF-

Oh my, do you have a history!! I suppose adding extra salt to your diet is out of the question? Yes, hydration is important and can help. Extra salt can as well if you can tolerate it. The salt helps to retain fluids.

I really don't know what to suggest on the vision problems other than wearing sunglasses, and waiting for the Doc to do what he can too help.

With your history of stoke, have you had a sleep study done? There is a definite connection between Apnea and stroke, and several of us with Dys also have sleep disorders.

I wish I could help more, but can't think of anything else at the moment. I hope you can get some help soon.

I'm sorry you are having so many issues with your eyes. Try to find a neuro optometrist or neuro opthalmalogist. They are the right specialists for those with neuro issues and eye problems. All my best to you,