Blind and Visually Impaired Community
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Really struggling right now (self.Blind)
submitted by Agreeable_Morning_60
A year ago I was diagnosed with Usher syndrome (RP) and now i am legally blind. My hearing has been going lately. And last week I was in the ER twice because I have begun to lose control of the left side of my body. They suspected it could be MS, so I had a spinal tap done. Today I found out they sent the sample to the wrong lab, and I am still without an answer. Im going blind, deaf and now I am losing control of my left side. I dont know what to do anymore, im really struggling here…
Update: Went to the neurologist today, they managed to get me in! The doctor says that I have Functional Neurological Disorder or Conversion Disorder. Basically my brain is glitching out and sending improper signals to the left side of my body. Finally have an answer and a route to turning things around for me. Thank you everyone for your support!
Update: Went to the neurologist today, they managed to get me in! The doctor says that I have Functional Neurological Disorder or Conversion Disorder. Basically my brain is glitching out and sending improper signals to the left side of my body. Finally have an answer and a route to turning things around for me. Thank you everyone for your support!
carolineecouture 4 points 1y ago
I'm sorry. That sounds very scary. I hope they can figure out what's going on. Do you have a care team that you can talk with? Are you connected with any services yet? Doesn't make it less scary but having people to talk to helps.
Agreeable_Morning_60 [OP] 3 points 1y ago
Trying to get in to see a neurologist but soonest I can get in is Aug 31st atm. Mostly been playing phone tag with ER and PCP and lab. No one has an answer and I havent received any treatment because we dont know what it is. Currently having to use a cane to move around at work. What im worried about is I use a sight cane to help with walking but I cant use both canes at same time cus my left arm tends to go at same time as leg.
BIIANSU 2 points 1y ago
I honestly don't know what to say here. I'm really sorry to hear how difficult this has all been.
Drop me a DM of you'd like someone to talk to, literally anytime.
Drop me a DM of you'd like someone to talk to, literally anytime.
rumster 2 points 1y ago
I'm so sorry.
HeftyCryptographer21 2 points 1y ago
Damn, that sounds tough. I have Usher syndrome too, but my body works fine.
rumster 1 points 1y ago
Can I tell you something to hopefully make you feel a bit better. Your posts on this sub have been really enjoyed by me and others. I have very few people on here where they have +20 points on upvotes from me. I hope you have some answers to what is going on with you and understand people are rooting for you across the world. I'm from Chicago.
Agreeable_Morning_60 [OP] 2 points 1y ago
You dont know how much that means to me. First tears of happiness ive had in quite some time. I love this sub, even if its only been a short time being apart of.
rumster 2 points 1y ago
I am being 100 with you. Very few people have that many +1's on my account. I'm glad you smiled. :D
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