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marlene

Eyes sealing together?

6 posts in this topic

I have had a problem with dry eye and swellings. It is really uncomfortable and when I looked closer, my top and bottom of my eyes are now sealing. I went to my G.P who confirmed they are sealing up. I am still waiting to see if they will refer me to the specialist as it is out of the area that I live in the Highlands of Scotland and there is a great reluctance and dragging of heels.

 

Has anyone had this problem as I can't find anything documented about it?

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Hello Marlene

 

I have never heard of eyes sealing up but do know that dry eyes and it's complications can be caused by many things such as scleroderma and Sjogren's Syndrome.

 

I take it your doctor ruled out any sort of viral or bacterial cause? I do find it odd that your doctor agreed your eyes are sealing but didn't suggest or do anything about it? You are going to have to be your own advocate here and make sure that you referral is being made and that it is to a scleroderma expert. Actually the more I think about it the more alarming I find it that a doctor agreed your eyes are sealing up but didn't seem in any hurry to do anything about it. You really need to be under the care of a doctor who knows about scleroderma and sooner rather than later.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thank you Amanda for your reply.

 

I am quite distressed about my eyes really. It is so noticable now, its about 4mm sealed. Thank you for the list of specialists and I asked to be referred to Jill Belch in Dundee as that is the closest to where I stay. Its about 160 miles away. The G.P filled in the form and I understand the delay is with the consultant not signing it as they will only refer when they feel that it can't be handled in this region?

 

I have been asked where I got the list and who advised me to ask to see a sclero expert. I told them I have joined this website which I found by accident and the info and support has been fantastic.

 

I am due to go into hospital on Monday as a day case to have an illoprost infusion and I will push for the referral then and ask to see and eye exper.

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Hello Marlene

 

I hope all goes well with the Iloprost infusion.

 

Yes push to see anyone you can. I don't know how the referral system works in Scotland I have to say but I would have thought the answer to whether it can be handled locally is clearly no as the consultant isn't a scleroderma expert. It might be worth taking advice from Citizens Advice Bureau or PALS, the patient advice and liaison service. They should know what you can do about a consultant dragging their heels and whether you can insist on seeing a scleroderma expert.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Marlene,

 

I'm so sorry to hear about your problem with your eyes; it sounds really painful and worrying.

 

Amanda's advice about pushing to see a Sclero expert is so true. One thing I've learnt about the NHS is that you do have to be your own advocate in order to move things along. Even though I received wonderful treatment myself, I've known others who haven't been so fortunate and in the case of my own mother, I find I'm constantly telling her doctors exactly what I want them to do for her.

 

I do hope that you are soon able to get your referral and also that your Iloprost infusion goes well on Monday; I shall be thinking of you. :emoticons-group-hug:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Marlene,

 

After reading of your distress about your eyes (you poor thing :o ), I am hopeful you will be found eligible to receive appropriate attention to your eyes.

Once you go into the hospital for your infusion on Monday.

It seems preculiar (to me) that you were not referred immediately, but then, I am not familiar with how your health programs work in Scotland. It seems to me that if this dr didn't know how to help you, he would have taken steps to find out who COULD.

 

I am sending lots of virtual :emoticon-hug: s your way to help alleviate your distress and to take with you for your comfort during your infusion.

 

Please keep us posted?


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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