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Eye trouble


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#1 georgette

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Posted 08 August 2008 - 11:29 AM

hi everyone , yesterday I went to my eye specialist , I've been having trouble with the right eye from the start of my sclero , but yesterday he told me my optic nerves were shrinking due to lack of blood flow he said its probably some form of vasculitis , I told him I had already been diagnosed with vasculitis , has anyone else had this problem ? got to go back in 2 weeks for another test to check my peripheral vision , its all a bit scarey , I couldnot cope if I went blind !!!!! he also said that the indentations in my skull (like holes ) some in a long line , was probably pagets disease , which is common with autoimmune diseases , any one had that ? would so appreciate some feed back hugs georgette

#2 Margaret

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Posted 08 August 2008 - 01:07 PM

Hi Georgette ,

I am sorry to hear about your eye problems. Paget's disease is usually associated with the breast.....it starts as a skin lesion around the nipples and may be associated with intraductal cancer below the epidermis (skin). I haven't heard it used for skin lesions on the skull before. Perhaps you should see a Dermitologist.

Take care, Everyone.
Margaret

#3 lizzie

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Posted 08 August 2008 - 10:29 PM

Hi Georgette , sorry that to hear about your vision problems, It must be very stressful for you at the moment. Just wanted to say that although Margaret is right that you can have Paget's disease of the breast, there is also Paget's disease of the bone , which, as well as other bones, can effect the skull - I think that it the Paget's your Dr was suggesting you may have. Has the eye specilialist referrred you to anyone re the Paget's ?

Lizzie

#4 Margaret

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Posted 09 August 2008 - 01:21 AM

<<there is also Paget's disease of the bone >>

Lizzie ,

I didn't know that. Is it also associated with cancer?
Thanks.

Take care, Everyone.
Margaret

#5 jefa

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Posted 09 August 2008 - 02:08 AM

There are no links to Paget's on this site, but here is the link to the Wikipedia article on Paget's disease of the bone for your information.
Warm wishes,
Jefa

Carrie Maddoux
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#6 georgette

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Posted 09 August 2008 - 11:49 AM

thanks everyone for your replies , re: my eyes the doctor put me on blood pressure tablets (low b/p) to open the vascular system and for the pagets ,since I am seeing my rhumitologist on monday he said speak to him about it . my dad had pagets so I guess I'm not too surprised about that his legs were very bowed , my neclear bone scan showed cold spots in the heels, knee caps , ribs , collar bone , spine nose bone but didn't pick up the skull bit as it is high on top of the head but it didn't take long for the hole to appear in my skull maybe less than a month , no cure for it just treatment where necessary and some meds to help with the spread of it , the eyes are my biggest concern , for months now I had been loosing left side vision only ,everything I focused on I could only see the right side of it , the doctor's just kept saying it was painless migraine , but I knew it wasn't , so at least now something can be done .... I was just hoping someone here at the forum had the same thing so I could learn more about it and how the sclero will react next , hugs georgette

#7 debonair susie

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Posted 19 August 2008 - 03:44 AM

Hi Georgette,

I am only getting caught up on some threads/posts and read yours.

Please know that I am thinking of you and hope that you have success with your eye situation.

By now, I believe you have seen your rheumatologist? If so, how did your app't go?
Please let us know?

Soft Hugs,
Susie
Special Hugs,

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#8 Peggy

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Posted 19 August 2008 - 08:27 AM

I missed this one before too and I just wanted to relay how sorry I am and I can only imagine how worried you must be. Please keep us updated on how you are doing.

Warm hugs,

Peggy

#9 georgette

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Posted 20 August 2008 - 01:35 AM

hi to everyone..... yes I have seen the rhumitoligist and he started me on drugs for the pagets desease , "actonel" it suppose to help with the bone density , the hole in my skull is starting to fill in again but it is a lot softer than normal bone ,the skull bone all around that area feels hot as if I have an infection in the bone ,so I am hoping with time that all will settle , the pain specialest said the shrinking optic nerves plus on going headaches ugh !! is not only because of the vasculitis but all the muscles in my neck are so hard (like wood ) he said that would also be contributing to my problems as while these muscles are so hard and tight it restricts the blood into my head !!!! so back to physiotherapy, heat packs and the TENS machine , its helping so I am getting some relief now , thanks for your support hugs georgette

#10 Purr

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Posted 20 August 2008 - 04:21 AM

Hi Georgette,

I'm glad to know you are getting some relief with therapy (what's a TENS machine?). Eye problems and headaches can really slow a person down. I've been having headaches off and on for alittle while. My Rheumatologist is fitting me in to her schedule tomorrow afternoon. I'm having some problems with weakness, too.

Hope your day is going well.

Take care,
Christy
Love makes the world go around!

#11 georgette

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Posted 21 August 2008 - 12:46 AM

hi purr , a TENS machine is a device where you stick pads onto the effected muscles and it sends an electric pulse into the muscle ,it, along with heat tends to help the muscles unwind and relax .....very benificial ,hope you get some relief after your rhumotologist appointment .....hugs georgette

#12 canon

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Posted 21 August 2008 - 05:10 PM

Hi Georgette,

This sounds like a new diagnosis for you and I hope knowing helps you with coping. It sounds like an awful lot to deal with but you sound so positive and that is great. Will keep you in my thoughts and wishing you speedy relief from your pain.

Canon
A happy heart is good medicine.

#13 debonair susie

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Posted 24 August 2008 - 12:41 PM

Hi georgette,

I am so glad you are getting relief...I've been thinking about you since reading your thread.

Thanks a bunch for letting us know how your rheumatologist app't went!

Hugs,
Susie
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Susie Kraft
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