Comments on: Multifocal Choroiditis

By: adcrag1

adcrag1 — Sat, 19 Nov 2011 02:42:05 +0000

I was diagnosed with MFC in 2002, my right eye is lost to a major bleed. But the MFC is in my left eye – I have taken oral steriods with great success at first; then it stopped working. Plus I acquired every bad side effect and was taken off. Currently be managed with methatrexate injections every 2 weeks during flare up. Developed glacoma being controlled by bleb (drain tube to reduce pressure) and Redisert implant attached to my retina (this has to be changed every 2-3 years) Legally blind unable to drive or read normal print without magnification.

This disease I was told is autoimmune and has scarred quite a bit of retina. Praying when it flares up and scares it will move out toward my ears and not toward my nose; most of my sub focal is gone. Blindness is always a possibility. Praying for modern medicine will find a better cure or do retna transplants. I can only pray and dream. God Bless you all

By: anoeska

anoeska — Wed, 09 Nov 2011 20:09:43 +0000

hmmm again I don’t totally agree with the last sentence either (english is not my motherlanguage). It can may develop glaucoma if you take steriod, but without steroids or wait untill the leaking will reduce it can leave damage as well.. choices…

By: anoeska

anoeska — Wed, 09 Nov 2011 20:03:02 +0000

“The doctor didn’t told me so there aren’t.” There are side effects with steriod. Discuss with the doctor. If you get too much steroids it can develop indeed glaucoma. Good luck.

By: anoeska

anoeska — Sun, 06 Nov 2011 21:03:24 +0000

I have MFC in my left eye since I was 20 and now i’m 27 years old. It comes back every 1 or 1 1/2 years. Now it started 4 days ago again. My vision is blurred for 40% now. And I see flashy/floating/grey things in my sight. And I feel a little pressure.
There are different reasons, but the mean reasons stays unclear. My sister has lupus and I think there might be a connection to it. And I think/noticed the spots in my vision starts leaking when i have been stressed and weak (health) lately.
So immediately call the doctor when the spots become blurry. He sometimes gives me steriods and the leaking immediately stops, but there are side effects I read in the other comments. The doctor didn’t told me so there aren’t.
Once, the blurry immediately popped up and the doctor said there is a change the leaking stops immediately as well. And it did.
I asked if i become blind one day, but he said it doesn’t but he is worried about one of the spots near my central vision. And there is a 50 % change it will come in the other eye as well. But at least stay healthy (sport, vitamines, sleep good) and not too much thinking and stressing helps I think…

By: SMU

SMU — Sun, 06 Nov 2011 02:43:25 +0000

Eveyone,

I have just created a private yahoo forum dedicated to multifocal choroiditis. The idea is to exchange stories, share the frustration but also the good news. Also, it could be a great place to collect some info on his disease.
Right now I am the only member as I literally created it about an our ago. Hopefully that will change soon.
Best, Sarah

http://health.groups.yahoo.com/group/multifocal-choroiditis/

By: Smusevilla

Smusevilla — Sun, 06 Nov 2011 02:39:27 +0000

e klein:

I’m seeing dr Richard Spaid in Manhattan. He is among the best when it comes to mfc treatment and has published extensively on this disorder. On top of being a good doctor he is also just a really nice person who really understands how hard it can be to have mfc. I trust him blindly – pun intended.
Good luck.
Sarah
http://www.vrmny.com/about/spaide.html

By: Tim

Tim — Sat, 29 Oct 2011 00:35:37 +0000

I have had NFC for approximately 10 years. All stories on this page are true. Just stay on your meds, listen to your doctor. I have lost all vision in my right eye and have lost about 60% in my left. Thank god for IPAD

By: Sandra

Sandra — Fri, 28 Oct 2011 02:45:59 +0000

I was diagnosed with Multifocal choroiditis and choroidal neovascular membrane in my right eye in 2009, my retina specialist said the best treatment option was Avastin injections and recommended 3 of them, I couldnt have laser as my central vision was affected. The pressure in my eyes were borderline at this stage. I had the 3 injections after the 3rd one I developed glaucoma and I now have a permanent floater. My right eye is like I am looking through a wavy pane of glass and vertical lines are crooked and central vision is distorted. Its hard to focus on things and I sometimes have blurred vision. I see a opthamologist and have my eye monitored. Im 48 years old in Sydney Australia. Would be interested to hear from others with similar condition. Ive found it hard to find info about this condition.

By: Sarah

Sarah — Thu, 27 Oct 2011 06:33:45 +0000

I was diagnosed with MFC about 2 years ago, I am now 23. I’m really confused about the whole disease and from what I hear I’m very young to have it. I’ve had about 5 avastin injections thus far, it helps for the time being, but my eye always flares up. Vision gets really distorted like I’m looking through water!! Am I’m going to lose my vision completely??

By: e klein

e klein — Mon, 17 Oct 2011 01:11:17 +0000

can any one advise a doctor who specilizes with mfc in nyc area

By: Ann

Ann — Tue, 27 Sep 2011 14:27:29 +0000

My daughter was diagnosed with choroiditis in both eyes, and she has coped with it for 3 1/2 years now. Oral steroids (prednisone) and PredForte together toned down the inflammation in the front and back of the eye for a while, but side effects like insomnia and mood swings were hard to deal with when really high dosages were needed. Local injections of steroids in the eye help without those side effects, and she has had several injections. When blood vessels have enlarged because of inflammation, she’s had avastin injections to limit blood vessel development that would damage her eye sight. Methotrexate and arthritis-therapy biologics have been suggested. To anyone who has this condition, find the best opthalmologist available, make sure he/she will see you as needed and has a network of retinal specialists, etc., available, and stay on top of this condition. As Kathy mentioned, all prayers are appreciated!

By: Coco

Coco — Sat, 14 May 2011 21:11:50 +0000

Well I’ve seen a retina specialist and he put me on pred forte drops and it doesn’t seem to help. My vision is so so. Hasn’t really changed. The doctor said it would burn itself out and get better. I’m wondering when thats going to be. Peripheral vision is blurry and small print. I just want to know what’s causing it.

By: Kathy

Kathy — Thu, 14 Apr 2011 16:14:51 +0000

I have been dealing with visual loss since 1990. It started in my right eye with blurred vision and I had seen a retina specialist. I am now 45 years old and a female.. I was diagnosed with histoplasmosis and laser surgery was done which destroyed my center vision. Then in 2002, I started to have blurry vision in my left eye. I went to see a different retina specialist and I was diagnosed with Multifocal choroiditis. I was started on prednisone tablets and pred forte drops. Treatment helped reduce the swelling and my vision came back. I had two more flare ups that year, one mild, and one bad one that lasted 6 months until my vision cleared up. Every year after that I had three flare ups a year, mostly in March, July, and November. After 2007, the disease went into remission. Now in 2011, since March, I have already had two flare ups again, one a month ago that had cleared up, and one now again that has just started three days ago. It is a hard disease to deal with because you go on your meds for treatment and pray that you have a good outcome, also all the time hoping that the swelling does not leave scar tissuw to destroy the remaining vision that you have left. It is a very difficult disease to deal with and it is hard to accept it when you have it. I recommend that you keep seeing your doctor and stay on your treatment. It is the only thing you can do. Surgery is not an option , and as of now there is no cure. I recommend that you stay on your medication as prescribed and continue to see your doctor. Just keep praying that your vision comes back and that if you do have vision loss it is not significant. I wish you all the best of luck as it is a harsh, complicated disease to deal with. Good luck to all of you on this post and hopefully you do not lose your vison. It is a big adjustment when you do.

By: Coco

Coco — Sat, 09 Apr 2011 19:49:39 +0000

4/9/11.. I was newly diagnosed with MFC, I work at an ophthalmology office. I really haven’t got any answers for what causes this. My doctor thinks I have some autoimune diease. But know one can figure it out..I wanting to see an RA doctor. Does anyone have problems with there joints, Fatigue, And just hard to get around. I wish I new what was going on with me. I’m on steroids drops for my eye..

By: Lydia

Lydia — Thu, 26 Aug 2010 20:01:42 +0000

I’m 30 and was diagnosed.. gosh.. I guess it was 3 years ago. So far it’s only in my left eye. I refuse to orally take steroids, and have had one injection to date. I seemed to be doing ok for awhile, but just recently I’ve had a really bad flare up. I’m wondering if anyone knows what causes the flare ups?? I feel like if I could avoid them it wouldn’t be so bad. But when it acts up, I can barely see, I get headaches, and I get so disheartened knowing that there’s basically nothing I can do about this… like I’m just waiting to go blind eventually. Also, what’s this that I’m reading about bleeding and leaking? Is it eventually going to do that as well??? :(

By: Angie

Angie — Sat, 17 Apr 2010 13:14:35 +0000

I am 33 and was diagnosed with Multifocal Choroidiitis 2 years ago. I was on steroids (prednisone) for a year and a half. They told me that I couldn’t be on them for a long period of time but that is the only thing that seemed to stabilize my vision. When I would come off of them I would have a flare up within a couple of days. We tried a drug called Methotrexate for a long term medicine but it didn’t help either. I went of the steroids and my right eye was blurry and left eye was the good one. I was off of them about 6 months and then I had a flare up in my left eye which I was counting fingers at 3 feet. I am now back on steroids praying that it gets a little better. They are going to try another drug called Imuran which is similar to the Methotrexate to substitute the Prednisone to try to keep from having another flare up. It is depressing not to have the central vision in the eye especially if it is in both eyes at the same time.

By: jenni

jenni — Sun, 04 Oct 2009 16:27:39 +0000

You need to get in quickly once bleeding or leaking occurs. I was misdiagnosed in my left eye 3yrs ago resulting in complete central blindness. May 08 at age 32 it hit my right eye. I have a wonderful doctor I’m working with and have lost count on my injections. I have been able to up to 12wks apart, now back down to six weeks.

By: Janice C

Janice C — Fri, 18 Sep 2009 01:19:38 +0000

I was diagnosed with Multifocal Choroiditis three months and have had 2 injections so far but about every 6-7 weeks there is a flare up. During flare ups is it detremental to my vision if I have to wait 1-2 weeks for treatment? My new doctor is booked and I can’t get in even though I can’t really see I have to wear a patch to keep from getting headaches and feeling dizzy. Could I lose my vision by waiting once the bleeding has started?