An addition to 'the pack' .....

[Scottietottie]

Hi 
In the UK there is an app called Patient Access. I really like it because I can find test results before I see the doc and keep track of appointments and things.

This week I had blood tests. They seem pretty well OK but I know when I see the doctor he'll nag me about cholesterol again.

Apart from looking at test results, I clicked on the 'problems' bit. in so doing I found something that no one has written a letter to me about as yet. Apparently I have a diagnosis of Chronic Progressive external opthalmoplegia.

Obviously I tried to find more out about it but all the 'medicalese' kinda tripped me up. From what I can gather there might be a mitochondrial connection. I couldn't really make out what it might progress to. Not life threatening or anything just another thing I could do without.

Anyone know anything about it? Totally unsure whether there is any connection with SjS.

Take care - Scottie 

[meirish]

Scottie, I did a little research and found this site which had a lot of info. It is EyeWiki American Academy of Opthalmology.

Some info I found further down on this site said that Pain, proptosis and periorbital swelling and lid lag/retraction indicate a different cause and if symptoms are in one eye only or rapidly progressive need prompt neurological testing. Also seems like family history is extremely important in helping to diagnose this issue. Hope this site can help. Good luck. meirish

[Scottietottie]

Thank you Irish!

[ToniiiMack]

I found this link.  Maybe it will be helpful to you. 

https://medlineplus.gov/genetics/condition/progressive-external-ophthalmoplegia/

Toni

[Scottietottie]

Thanks ToniiiMack - that was a great link. I do have some of those other symptoms - apart from the eyes.

Take care - Scottie