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Living with Polyneuropathy CIDP, GBS, & CMT

Eye problem

#1

Hello everybody. Next week will mark 4 years since I was diagnosed with GBS. Life is pretty good and I’m about 90% back to normal. At the beginning of December 2018 I started experiencing problems focusing 24/7. I’ve now been to my eye specialist and he puts the fault with GBS. As usual nothing is written in stone. I can still do everything I did before this cropped up except do quick shelf scans at the grocery store :confused:. I’m hoping it will go away ‘some day’
Have any of you GBS people experienced this as a 24/7 thing? When I first had GBS I would get it occasionally but only when I just woke up or was tired.
I must add that I don’t let it affect my humour. It is what it is…basta!
In my country :denmark: There are only about 75 GBS patients per year so you can imagine my surprise and delight when one turned up at our twice weekly training. He and I really compete with each other and it makes the others laugh.
Have a good week! Maryt

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#2

Hi Mary,
I was diagnosed with GBS 3 1/2 years ago and also have ongoing vision issues. I have seen a neuro ophthalmologist and was told it is nystagmus (uncontrolled muscle movements)probably related to GBS. He said it will only get worse when I am tired and not to drive when it’s occurring. He did recommend a special tint for my glasses and I purchased a glare reduction screen for my computer. Every little bit helps.
You sound like you have a wonderful outlook, humor does help.
I continue to struggle with nerve shocks, pain and weakness and am curious if others do as well this long after initial onset.
I pray for the best for you and all the GBS/neuropathy warriors
Patty

#3

Hi Patty, thank you for your quick reply. I’m sorry that you are still getting these nerve shocks. I very rarely get them but when I do it’s usually when I’ve just gone to bed and zonks my big toes. My GBS twin that I train with really gets them badly. It’s 4 years since he and I were diagnosed.
From what I’ve gleaned from talking with Svend who in turn is friends with the leading GBS reasearcher in Denmark, nearly all of us are left with varying degrees of ‘souvenirs’ from GBS. My pet peeve is the tiredness but I must say at once that learning to plan your jobs and activities really is a big help to get the most out of your day.
Since GBS I developed a heart condition (fixed) and a lung disease (under control with no signs of advancement) and believe me I live a normal, happy, productive and active life albeit within certain frames.
I think that literally getting back up on your feet after you’ve lost all mobility and capacity to help yourself, gives you the most unbelievable zest for life.
I hope that all GBS patients are finding this out. I never compare what I could do before, but what I couldn’t do to my Wonder Woman abilities now.
All the best to you Patty.

Mary

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#4

Hello there. I myself don’t suffer from GBS. However my Mom has CIDP. My mother in law suffered GBS years ago and our good friend , whom I’m helping out was diagnosed with GBS , 3 weeks ago. I’m feeling like an expert at this point. And I can verify GBS can effect just about Everything. Thankfully one person doesn’t get ALL the effects, but it seems there is nothing it can not effect. Brain, body, vision, all the above and beyond. And the kicker is that nobody can tell you if , why, or when symptoms will go. But hopefully in your case since it went away once, it’ll go away again. Bodies are a strange thing. Wish I had a definitive answer for you. But if I did, then I’d know more than science knows about this bugger of a syndrome. God Bless

#5

Aaah Mary,

I love :two_hearts: your positive outlook even after all you have been through. You are a real life Wonder Woman!

All the best to you

#6

Oh Patty aren’t you just a sweetie. Thank you for saying such kind things. You made my day.
Numbs, your friend is so fortunate to have you in her life when you are so in tune with GBS. Please tell her that armed with Persistance, Patience and a positive outlook she will be able to knock the stuffing out of this GBS…no place for pity parties here, Onwards and upwards my friends!!
Will you let us know how she’s getting along pls Numbs. I’ll be cheering for her from across the sea in Denmark!
I was really glad that you got in touch with us. I think all those that cared for us, professional, friends and family deserve a special place in this world and the next.
Continue to improve Patty!

Mary

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#7

I also have eye issues. I have CIDP FOR 8 YEARS NOW. To complicate matters, I also have Fuchs Dystrophy, a corneal disease. Between the two issues, I am unable to drive or see anything beyond 10 feet. The eye thing was first and incapacitated me (or so I thought), but when I got the CIDP, the vision wasn’t as important as walking, swallowing, etc. good luck to you!

#8

Hi,
I have had CIDP for 7 years and for the past few I have indeed developed eye problems. It manifested as a blind spot/flashing lights ( light the start of a migraine). There was even talk of something serious. i spent weeks having scans, MRIs etc and eventually it was put down to my IVIG pressurising a blood vessel in my eye. It was a relief to hear, but it may happen again in future and it is quite scary. I’m glad you’re so positive, it is a hard slog!

#9

Hi Vikki, it really does sound scary. Thank you for telling your story.