Author Topic: Eyes!  (Read 4472 times)

Lesley

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  • Posts: 177
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Eyes!
« on: February 12, 2015, 01:48:06 pm »
Hello All

I think most of us with Amyloid suffer with exhaustion. I don't know how I'm going to try and explain this but here goes.
As I have felt pretty exhausted from the moment I get up to the time I go to bed (and sleep), my eyes feel heavy. But I cant help thinking my left eye looks different to me. I've asked others to look and they say it seems ok but both eyes just feel heavy - is this just the exhaustion making them feel like this or .... and I have to ask.... can Amy affect your eyes?
Sorry if it sounds like a dim question but its beginning to niggle me now.

Thanks

patpinchin

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  • Posts: 600
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Eyes!
« Reply #1 on: February 12, 2015, 04:37:16 pm »
My eyes are heavy too, Lesley but I know I have amyloid deposits in the peri-orbital area surrounding my eyes and in my eyelids. Both bruise at the slightest touch or tear. I see an Opthalmist regularly to check for amyloid in my eyes but thankfully so far none has been found. I have been told that it is quite rare. If amyloid is present in/behind the eye it can usually be removed. My eyelids are heavy with amyloid and over the 13 years with this disease my eyes have become partially closed. The skin at the outer corner of both my eyes has folded. My eyes water nearly all the time because amyloid has infiltrated the tear ducts so that they do not function properly. I have also lost many eyelashes which is common with this disease. Eyelashes ensure you blink frequently which helps keep the eye moisturised.  Dr Wechalekar told me these things are common in amyloidosis. My Opthalmist agreed. As the tear ducts do not function properly and I have very few eyelashes to keep the cornea moisturised through blinking, Dr Wechalekar and my Opthalmist both recommended regular use of a moisturiser to prevent the cornea drying out which can affect vision. My Opthalmist recommended Hylo-Forte eye drops at least 4 times per day. They are very expensive...£17.00 and last about 1 month. I have mine on prescription. I also use  Supranettes sterile eye wipes with which I clean my eyes and inner eyelids as normal washing is impossible because of the bruising. There are so many unpleasant add-ons to the main symptoms one suffers with this disease.  :-[
« Last Edit: February 15, 2015, 01:45:22 pm by patpinchin »
Pat

ziad_okeil

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  • Posts: 45
  • Reason for joining: AL Amyloidosis - skin/Soft tissue involvement
  • Diagnosed: 03/2013
Re: Eyes!
« Reply #2 on: February 12, 2015, 04:51:34 pm »
Lesley,

Fatigue and exhaustion are typical symptoms of AMY if some organs are involved (Kidney and heart, I think).

Regards,
Ziad

Lesley

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  • Posts: 177
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: Eyes!
« Reply #3 on: February 13, 2015, 12:47:46 pm »
Thanks Pat - I think I will mention it on my July visit to London.
Thanks Ziad - I have Amy in kidney/liver/spleen/bones and spine and touch in heart so I suppose exhaustion is going to be key, but key for most Amy patients as well!
I think I could lie in bed all day and night tbh!
Lesley