What should I say to ophthalmologist?

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megabyte
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What should I say to ophthalmologist?

Post by megabyte » Sun Feb 20, 2011 5:11 am

End of Sept. last year, I spent 2 weeks in extreme pain and had a red, watery eye because I was misdiagnosed. Finally I had an appointment with an ophthalmologist in the hospital who said I had iritis. Since then, you know the story: cyclopentalate, timoptol, pred forte, votarol amd maxidex. Twice I have been told to stop the drops. The last time I was told that there was no inflamation and all was well. Two days later, my eye was starting to get red again and progressed slowly - it was also very dry. About two weeks went by and my GP put me back on Maxidex 2 times daily. I did that for one week then 1 1/2 weeks doing 1 a day. I stopped on 16 Feb and slowly my eye is getting red again and also this time I am starting to get a dull temple pain.

My question is, rather than just being told to start the drops again, is there anything else that I should be asking? I did have a cold sore, but I am pretty sure it was not around the time that I got iritis. Is there a test that I should have maybe to see if it was caused by herpes?

Any suggestions would be extremely appreciated.
Thank you.

Mike Bartolatz
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Re: What should I say to ophthalmologist?

Post by Mike Bartolatz » Mon Feb 21, 2011 1:38 pm

The doctor should be able to tell if it is the herpes sx virus. this presents a little differently than regular autoimmune uveitis. the adhesion is in almost complete around the iris, pressures are elevated right away and aren't related to the steroid, the iris doesn't respond to light when off the dilating drops, and it keeps coming back when one tapers of the steroids. you might want to get a uveitis specialist to evaluate your only eye involved too since this is also a symptom of herpes sx uveitis. it is critical to start antiviral medications if you do have viral related uveitis and you wil have to take them for a very long time perhaps with a drop of steroid too I am sorry to say. you don't want the virus to reach the back of the eye where it can do allot of harm very quickly.

I hope this helps,
mike
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megabyte
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Re: What should I say to ophthalmologist?

Post by megabyte » Mon Mar 07, 2011 8:42 am

Thank you very much Mike for this information. While I was in SE England, I was going to try to see Susan Lightman which I read on your forum is in Moorefields Eye Hospital, London. Unfortunately, she is not listed there anymore, and looking at the list of consultants for iritis, I was not sure who to see:
http://www.moorfields-private.co.uk/Con ... 48a03d5b10

I am now home, but I will be going back in a week. I emailed Moorefield and they gave me the contact details for Prof. Lightman:

"Please find below the details for Prof. Lightman’s secretary:

Sarah Mayhew
020 7566 2266
s.mayhew@ucl.ac.uk "

I have just sent an email to above in the hopes that Prof. Lightman is still seeing patients. I will let you know the outcome.

Mike Bartolatz
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Re: What should I say to ophthalmologist?

Post by Mike Bartolatz » Mon Mar 07, 2011 1:37 pm

PLEASE CONTACT PROFESSOR WILLIAM AYLIFFE IN LONDON/CROYDON whom I feel is the BEST Ocular immunologist in the UK.
his contact information is also on the list at http://www.uveitis.org.

I've had Very good feedback from individuals who have seen him over the past few years. He can figure this out if anyone can in the UK.
Mike Bartolatz
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mtbargeman
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Re: What should I say to ophthalmologist?

Post by mtbargeman » Tue Mar 08, 2011 8:23 am

Hi, there!

Proffessor Ayliffe is pretty great. Another place you can go to find information, as well as current contact details for a specialist in the UK is: http://www.oliviasvision.org/ This organization is UK-based, and they are really great folks there, who can help a lot. Proffessor Ayliffe is involved very much with this group. I hope this was helpful.
Mary

megabyte
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Re: What should I say to ophthalmologist?

Post by megabyte » Wed Mar 09, 2011 8:13 am

Thank you both very much.

Mike, I just got a reply from Prof Lightman's secty saying that the Prof. will be out of the country until April, so I would not be able to see her anyway. I did see you mention Prof. Ayliffe before (2009?) and was going to ask you your thoughts on him. I am going to make an appointment with him after this email and will let you know the outcome.

BTW, both of my eyes have become very dry since this has happened. Do you think this is something unrelated or could it be because of steroids and it will pass when I am off of all medication? I do know that my tinnitus has come back with a vengeance since starting on the medications and I am hoping that that too will pass.

Regards,
L

mtbargeman
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Re: What should I say to ophthalmologist?

Post by mtbargeman » Mon Mar 14, 2011 5:53 am

Megabyte-

Dry eyes result from the preservatives in almost every eye drop, as well as steroid drops. It can be a real bear to treat, and having dry eyes can cause further irritation of the eyes, increasing light sensitivity. YOu can get over-the counter drops for dry eyes that don't have preservatives in them. I forget the name- I haven't needed those drops, or Restasis (cyclosporine-A) drops since they put plugs in my tear ducts last April. Be very careful about dry eye- it can blind you as surely as any other OID, as well as being painful and itchy. Good luck, and I hope you find an answer.
Mary

Mike Bartolatz
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Re: What should I say to ophthalmologist?

Post by Mike Bartolatz » Mon Mar 14, 2011 5:47 pm

dry eyes can be from autoimmune disease especially when tinnitus is involved. this can be from a virus such as the herpes family of viruses or it could be from an autoimmune disease. things like Sarcoidosis, Sjogren's syndrome, Systemic Lupus erythematosus come to mind but there are others possibly linked as well.
do you also have dry mouth and other dryness issues? mouth sores?

Professor Ayliffe is in my lay opinion the BEST ocular immunologist in the UK.
tell him you were sent By DR Foster's support group here in the USA, I've sent many people to see him over the past years since he became an ocular immunologist there in the UK. MR Ayliffe studied in the USA at Harvard Medical School under Dr C Stephen Foster the BEST specialist in the World.

wishing you quiet eyes and quiet ears too as I have Tinnitus and severe dry eyes as well treated with punctal plugs implanted into the drains of my eyes to keep fluid on the surface of my eyes longer. the tinnitus may be related to diabetes in my case as when my blood sugar goes high, the tone is much louder.

Wish you the best,
mike
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megabyte
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Re: What should I say to ophthalmologist?

Post by megabyte » Thu Mar 17, 2011 11:29 am

I have an appointment with Prof. Ayliffe for this friday morning. I will tell him Mike about Dr. Foster's support group and about you and the wonderful help that you give so many people.

As for my dry eyes, yes I have been prescribed Systane (with preservatives) but only because I mentioned "by the way, will my eyes be less dry when I stop using steroids" and when I asked how long I should be using these, the answer was for the rest of my life.

I must write down everything I want to ask him because even though I know what I want to say, I usually forget when the time comes.

If you want to help me make a list, I would be very happy :-)


Providing I have good internet access in the cottage that I am going to rent for a week, I will get back to you as soon as I see him.

Wish me luck!

Mike Bartolatz
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Re: What should I say to ophthalmologist?

Post by Mike Bartolatz » Thu Mar 17, 2011 2:34 pm

lets wait until professor Ayliffe examins you before making a list of questions. He is Very good at what he does.
what you can do is list what has occured in the past medically for both yourself and your immediate family. any forms of arthritis, skin rashes, systemic diseases etc should be outlined. if you traveled outside your local area or if you have been exposed to farm animals, dogs, cats etc these things should also be noted.
any test results for things suspect as a potential cause like HLA B27 for example or if you have cold sores on your lips or nose that should be indicated.
if you have dry mouth or other dryness issues that should also be indicated. rashes anywhere on your body, discolored finger or toe nails, Gi distress etc too.

enjoy your trip to London. try not to become anxious and let professor Ayliffe guide your treatment. As I've indicated, he is the BEST specialst in the UK. He will find a way to stop the uveitis.

the support group at http://www.uosg.org has a forum for individuals from the UK to interact. I suggest that you get involved there. I help out at that forum too.
Take care,
mike
Mike Bartolatz
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megabyte
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Re: What should I say to ophthalmologist?

Post by megabyte » Fri Mar 18, 2011 4:59 am

OK, thanks Mike. I will be good:)

There are a few points you made which refer to me and I do have a spreadsheet (sad me!) of the medication I have been taking for the past 6 months which I will also have with me.

I'll be back to you with the outcome.

Mike Bartolatz
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Re: What should I say to ophthalmologist?

Post by Mike Bartolatz » Fri Mar 18, 2011 12:49 pm

Good luck with the appointment with Professor Ayliffe. You will like him from what others have indicated.
he should be able to refer you to his NHS clinic for followup so you won't have to continue to pay out of pocket if I recall correctly.

Take care,
Mike
Mike Bartolatz
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megabyte
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Re: What should I say to ophthalmologist?

Post by megabyte » Sat Mar 19, 2011 10:32 am

I cannot see me going to him again unless it is really necessary because it is costing me over $500 just to take a not very nice ferry and the petrol to London and back. Plus I am renting a holiday cottage an hour away so I can save a bit by not eating out 3 times a day. I decided to rent it for a week since the trip is so expensive which adds another $600. A hotel would have cost me $200+ a night...

So as you can see, this is not something I am going to be doing weekly :)

megabyte
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Re: What should I say to ophthalmologist?

Post by megabyte » Fri Apr 01, 2011 5:38 am

My appointment went well and yes Mike, I did like him.

He ordered various blood tests which includes 'Rheumatoid factor' and 'Lyme's disease'. Also, I am back on Maxidex, 1 drop daily for 2 months. He has added Aciclovir tablets to be taken for the next 2 months as well. I suffer from cold sores and had an outbreak about a month before my first flare-up with iritis, so there might be a connection.

He wants to see me in 2 months which might be difficult because I was planning a long trip to the States, but IF I am not responding to his treatment or IF he thinks it is necessary that I see him anyway, I will stay here. Worse comes to worse, there is also the possibility that I could see Dr. Foster since I will be near there.

BTW, he also said I now have cataracts in my infected eye. My vision has been getting very blurry since my first bout of iritis 6 months ago, but I thought it would get better after my eye was better...not so. He does cataract ops too, so I will be seeing him in the future for that.

One good thing is that he said I can use my contact lenses! I have to wait a bit after the steroid drop before putting them in, but I am thrilled that I will be able to wear them again.

Regards

Mike Bartolatz
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Joined: Fri Feb 06, 2004 9:58 pm

Re: What should I say to ophthalmologist?

Post by Mike Bartolatz » Fri Apr 01, 2011 12:33 pm

Glad your appointment with Professor Ayliffe went well. It is great that he has put you on The antiviral drug to hopefully control this. if it is herpes related, then you will most likely have to take this for a long time to keep the virus in hibernation. should it go to the back of the eye, it can kill tissue very quickly (acute retinal necrosis, ARN). once this is quieted down and the CATARACT causes vision los that is significant, then Professor ayliffe can pretreat with something like Durezol a topical corticosteroid of a different type as well as after surgery. believe it or not cataract surgery done by a very good surgeon has almost no pain. I had both eyes done but i still have to wear glasses but I see pretty well out of one eye at 20/40 now (the other is considered blind but I can see out of it). near vision is worst with the lens but this would be the natural progression with age anyway.

if you do come to the USA and require an appointment with DR Foster while here, make sure you ask to speak with Frances Foster who is head of his clinic in order to get an expedited appointment. mention my name and she will make sure you get in right away.

Take care,
mike Bartolatz
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