Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Eyes


  • Please log in to reply
9 replies to this topic

#1 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 26 September 2009 - 10:22 PM

I went for a check up yesterday for my eyes and the opthalmologist because of long existing eye issues. I have had bad CSR in the past which has damaged the central area of my vision, also had to have laser treatment because of right eye being so bad. Anyway in the past year I have noticing some very strange things happening again which affects my vision for anything from 5-15 mins. I explained this to him (a different doctor each time I go) and he said he thought it was just because of the previous damage. I asked him if Raynaud's, BP or SSc could be causing any of this change but he brushed me off and said no and also discharged me. He did say if I have any problem to go to A&E! But when these episodes occur they would be over by the time I managed to get to A & E!

The reason it does worry me is that mother went blind in one eye(they don't know what's caused it), my grandfather went blind in both eyes and my father also had serious loss of vision so I know I have a strong family history of eye problems.

Does anyone else have issues with their eyes? Can it be related to the autoimmune problems?

Buttons

#2 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 27 September 2009 - 04:23 AM

Hi Buttons

I understood that Scleroderma/autoimmune can affect any body part/organ, which I think could mean yes although I'm no doctor by any stretch of the imagination! That being said, however, with the family history, I really hope you can get to another specialist and get to the root of this...to see what might be causing it for certain....being that dismissive would cause me to continue looking for another opinion too, which is likely your gut feeling your referring to, it is just plain wrong :angry: !! Follow your instincts... ;)
Sending good wishes your way!

#3 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 27 September 2009 - 09:12 AM

Hello Buttons

Could you clarify what is happening during these incidents with your eyes?

I have had periods of strange things happening too. Areas that suddenly appear absolutely black, either like a curtain passing over my vision in one eye or small back holes sort of shaped like fish. It only lasts a few seconds then disappears. But it has repeated on occasion. My eye doctor looked but couldn't see anything except I seem to be forming cataracts.
My family has a history of vision problems too but it was macular degeneration. But I know that stress can cause eye migraines too.

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 27 September 2009 - 10:21 AM

Hello Buttons

I am sorry you're having eye problems and also sorry the doctor dismissed your concerns, I wonder if doctors are dismissive so they don't have to admit they don't actually know. As you are still having problems and have such a family history I would consider seeing another doctor as you've yet to have a diagnosis of what you're currently experiencing.

Take care.
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)

#5 eirvin

eirvin

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 27 September 2009 - 01:38 PM

Dear "Enjoy the Ride"

The symptoms you describe of the sensation of a veil crossing your vision can be associated with significant problems in the vasculature of the retina and should be thoroughly evaluated. This will require making an appontment with a specialist in ophthalmology, either a RETINA specialist, or a NEURO-OPHTHALMOLOGIST. A general ophthalmologist, given this description of symptoms, would be wise to refer you on to a specialist before concluding that they are migrain equivalents.

If you have not had such an evaluation, please arrange for this. And, please let us know what you learn from your consultation.

Warm regards,

Liz
____________________

Elizabeth Irvin, PhD
ISN Guide to Eye Involvement
Email: [email protected]
Eye Page
http://www.sclero.or...yes/a-to-z.html

#6 eirvin

eirvin

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 27 September 2009 - 01:47 PM

Dear Buttons,

Your symptoms should be evaluated, either by an opthalmologist thoroughly, and I would like to recommend a specific physician for you to consult with. You are in England. Rather than deal with the PHS about this, please make an appointment with this physician.


William Ayliffe, FRCS, PhD
Appointments Contact Hospital of Choice directly below or e-mail:
[email protected]
tel +447958445462

Hospitals
1. Lister Hospital
Chelsea Bridge Road
London SW1V 8RH
0207 730 8298

2. Shirley Oaks Hospital
Poppy Lane
Croydon CR9 8AB
0208 655 2255

Mr. Ayliff has specialty training in a field called "Ocular Immunology," and is a specialist in understanding how autoimmune problems may affect our eyes. Pay out of pocket to get started if you must. He can also be accessed through the PHS, but you can do this after seeing him. Your complaint needs to be taken seriously and should be evaluated. You will not get this evaluation through seeing a doctor in training in the emergency service.

What is an Ocular Immunologist (http://www.uveitis.org/kids/OI.htm)

Please let us know that you learn from your consultation.

Warm regards,

Liz
____________________

Elizabeth Irvin, PhD
ISN Guide to Eye Involvement
Email: [email protected]
Eye Page
http://www.sclero.or...yes/a-to-z.html

#7 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 27 September 2009 - 01:56 PM

Welcome Liz, and thank you for your post. I just went to an eye doctor for that same feeling of a veil over one of my eyes and some pressure. He said, after thorough checking that he thought I was at the beginning stages of glaucoma. But not to worry it could take years before causing any real problems. So, I just hope the feeling isn't bothersome every day all day and all the time. I have had about a month off from the pressure and very little pain. I guess all of us should keep on top of this and even see another doctor for second opinions if necessary. All of you keep us updated so that if others find themselves in this situation they know what might help.
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#8 eirvin

eirvin

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 27 September 2009 - 02:14 PM

Hi Sheryl,

Thank you so much for the warm welcome.

The observation of a "veil" passing over one's vision, as though a curtain is being pulled, is not associated with pain or presure. It is a rare symptom and can be associated with retinal occlusion and should always be evaluated.

Raised intraocular pressure (pressure rising inside the eye) is one of the more common eye problems associated with scleroderma. If one has raised intraocular pressures (raised IOP) for a prolonged time, the optic nerve will be damaged, and vision loss from that is permanent. When the optic nerve is damaged, the condition is called glaucoma.

While most glaucoma steals vision silently, there is a type of glaucoma where pressure inside the eye rises suddenly and, if it rises high enough, is associated with pain around the eye and, sometimes, a cloudy or blurred vision. If one has pain from raised IOP, it is considered an emergency and should be evaluated immediately.

The other most common problem for us is dry eyes. Did you know that the surface of the eye, the cornea, has more nerve endings than any other part of the body. When you consider that fact, isn't it amazing that we blink all of the time without noticing it? I think so. Dry eyes can be associated with a lot of ocular pain and pain around the eye and blurred vision. It is a treatable condition and CORNEA SPECIALISTS are the ophthalmologists who can be of the most help if one has this condition.

So, as may be obvious, eye symptoms can be very complicated stuff and symptoms should be evaluated by a specialist. My concern is that we often see a general ophthalmologist, if we are lucky, and that the services of a specialist in GLAUCOMA, RETINA, or CORNEA, or OCULAR IMMUNOLOGY would be more appropriate to follow significant problems (glaucoma, dry eye, retinal vein problems).

In your situation, if I had been told that I was a glaucoma suspect (what you have been told), I would strongly consider getting myself under the regular care of a glaucoma specialist because of the interaction of our disease with this particular eye problem.

Warm regards,

Liz
____________________

Elizabeth Irvin, PhD
ISN Guide to Eye Involvement
Email: [email protected]
Eye Page
http://www.sclero.or...yes/a-to-z.html

#9 Buttons

Buttons

    Senior Silver Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 27 September 2009 - 11:04 PM

Enjoytheride, it is very difficult to explain what is happening but here goes, my vision becomes distorted and I get areas which have greyed out and sometimes I have double vision with it. It is not the same experience as when I had the CSR episodes because then my vision would 'swim' and verticals & horizontals lines would become curved, it also meant that when I looked at objects they would appear much smaller than they actually where. As you can imagine it caused some issues with reading and have had to have stronger lenses so that I could read, I also use a bright halogen lamp behind me so that it makes reading that bit easier.

I am going to talk to my general practitioner about it when I see him next (opthalmologist said he would write to him), where I live it's not very helpful either because we are so far from really good hospitals. My previous eye consultant was excellent! I had had problems for about 5 years before I saw him & was passed from one eye consultant to another and was told they thought it was linked to autoimmune issues. He diagnosed the CSR (normally men get this) and because it wouldn't resolve it self he did laser treatment which improved things quite a bit for me but did leave some permanent damage to the central area of my vision and scaring on the macular.


Liz, don't I have to have a doctors referral to see a specialist?

Buttons

#10 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 29 September 2009 - 05:47 AM

This thread has been very interesting to read, most especially because our household has specific eye issues that seem to be arising.

Liz, we all really appreciate your wealth of knowledge on this particular topic...thank you for speaking up and welcome to the the forum!

My mother has macular degeneration, as well as glaucoma. As of now, it seems to be holding steady...not worsening.
My husband must use steroids for treatment of COPD. He has only one eye with which he can see; The other, he is blind...
congenital.

Husband and I each have cataracts...both eyes.
Neither of us are excited about the prospect of losing our sight, but may down the road, unless there is a medical revelation in the meantime.
For now, I just continue to read and learn and your post was very informative, Liz. Thank you!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)