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Old 04-06-2012, 04:31 PM   #1
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lyngully HB User
Smile AZOOR? Any experience?

Hi
I was hoping to find fellow " sufferers" to share advice with.
Regards. lyngully.

Last edited by Administrator; 11-02-2012 at 08:47 PM.

 
Old 04-21-2012, 10:55 AM   #2
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Re: AZOOR? Any experience?

hi there i also suffer from spots in vision and other symptoms of azoor. i have been to countless eye doctors and they don't see anything wrong. its pritty amazing that im bombarded by these bright spots, some permanent and directly in my field of vision, and the doctors cant see anything. i try to deal with it best i can, and not obsess about it and check every 10 seconds if they spots have gone. i dont think they ever will. one doctor was able to see one of the spots and his reply to me was, "how can you even see that? its tiny". I told him its very obvious from where im standing and that was the end of my search for answers. this was about a year ago. i havent tried an opta neurologist but at this point, we might have to suffer in silence, i dont think there are cures for this type of stuff. all the best

Last edited by Administrator; 11-02-2012 at 08:44 PM.

 
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Old 04-21-2012, 02:08 PM   #3
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Re: AZOOR? Any experience?

Hi mishman
I'm quite sure the visual disturbances will be annoying (and sometimes amusing) for a long time. As it's not life-threatening and seemingly impossible to find a cause I'm not expecting some effective treatment anytime soon either! Although whilst web-browsing on astronomy websites my husband read an article about spending time outside in the dark helps with retinal disease. It does make some sort of sense as it is the light/dark sensors that are affected.
Feeling stressed makes the disturbances worse(looking through a pile of squirming worms!) as does overdoing exercise.
Likewise if you need to check out something, please post.
Regards Lyn

 
Old 04-22-2012, 11:22 PM   #4
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Re: AZOOR? Any experience?

Hi, my Opthalmologist has told me he thinks I have Azoor. I've been going backwards and forwards to the hospital for 6+ years. He wants to do a further test to confirm diagnosis but he's pretty sure that's what it is. I don't see well at night, my right eye is affected with the flashing lights more than my left and my vision in the right eye has definitely got worse in the last few years, more so this last few months. There doesn't seem to be a cure for this, which is frustrating but understandable. Does anyone else have this and if so, I'd like to hear about their experiences and how it has affected their ability to see i.e. do glasses help (they don't seem to help me), has their condition improved/worsened, has the steroids/anti-inflammatory medication helped at all?

Last edited by Lioness47; 04-22-2012 at 11:23 PM.

 
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Old 04-23-2012, 11:31 AM   #5
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Talking Re: AZOOR? Any experience?

Hi Lioness
I was diagnosed with AZOOR last December. I have been told that steroids don't really make much difference, as the side effects can outweigh the benefits. I have not taken any anti-inflammatories either. I take paracetamol and codiene for pain in my left eyeball.

It is a frustrating condition and mine is pretty stable. The blind spots are always there (left eye only), the flashing lights come and go.The Consultant explained that the flashing lights are caused by the affected light/dark cells in the retina trying to "fire". Lastly if I'm unwell/stressed or been over-exercising (fast pulse and feeling exhausted) I can see wriggling worms. It can be quite entertaining when checking my blind spots to make things disappear! How, specifically, is your vision getting worse?

My usual opticians have been pretty useless. I made a complaint last month after a regular appointment and have been disappointed that out of all the staff I have seen or spoken to, no-one has stuck their neck out and said they will do some research and find out if any particular eyewear will help. I wear polarised sunglasses in the sun anyhow, so they are on my head or face all day as I find sunlight/bright indoor lights and glare quite painful (indoors and out).
I take an anti-oxidant and selenium supplement with vitamins A Cand E for arthritis, vitamin A is good for eye health, so I guess I'm benefitting both at the same time!

I am sorry that I don't have much in the way of advice for you. Keep in touch and maybe we can find some answers.
Lyn

 
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Old 04-26-2012, 04:02 PM   #6
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Re: AZOOR? Any experience?

Hi Lyn,

Thank you for your reply. I did actually find it very informative (even if you don't think so). It's difficult to explain what I see. I have of course the usual floaters but to be fair that's not unusual at my age (apparently), the flashing lights (of course), but they have increased in number from 1 to about 5, forming a semi-circle in the right hand part of my central vision. My eye test is pretty abysmal now in that I can only see to about the 3rd line on the chart then after that i'm just guessing. In October 2011 I could see further down the chart. The test they do for your peripheral vision? You know the one with the little lights and you click when you see them, it shows a definite problem area (and quite a large one now) on the right side of my vision in my right eye. Reading the list of programmes on the tv is also difficult and I find I have to squint to be able to read it. With my left eye closed there's no chance of making sense of what it says. It's a red background with white writing and that does seem to be much harder to read than say a white background with black writing. Small print? forget it, can't read labels anymore even with both eyes. Basically, everything is fuzzy if I close my left eye and whilst that vision is holding up ok so far, it has reduced a little (possibly age related though). My obvious concern is what sight I can expect to be left with if this continues to progress but I think this differs from person to person in any event. The good news is that the hospital have said that this is a slow progressing condition and that no other symptoms have presented themselves from when I first went there (other than the reduction in my sight, which is pretty important I think). The point you made about the medication is helpful. The hospital are talking about putting me on steroids and I really don't want that if it's not going to help. Hope to hear from you soon because any information, (even if you don't think it's helpful) is useful. Kind regards, Lioness.

 
Old 05-19-2012, 02:20 PM   #7
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Re: AZOOR? Any experience?

Hi Lioness
I was told the same as you about AZOOR, in that if the symptoms are pretty stable it is unlikely that my eyesight will get worse. I feel lucky that I can generally see fairly clearly, light and dark are my enemies. It must be pretty hard having a disturbance in your central vision. My fireworks come and go randomly, the worms when stressed or overexerting myself. Reading etc., thankfully is fine. I walk into things regularly on the left at thigh height and often have bruises! I played badminton recently, hmmm, a bad choice, as my hand/eye co-ordination was terrible. I just got fed up and quit.
If particular colours are a problem to read, have you tried a coloured filter/cellophane?I'm not sure which colour will help, but try green first if seeing white on red is the problem (I think the red should turn dark brownish) Also, Try looking through a pinhole (or set of close pinholes)in a card may just help you to focus rather than squinting.
Take care, Lyn

 
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Old 05-20-2012, 12:40 PM   #8
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Re: AZOOR? Any experience?

Hi Lyn, thanks for the reply. The pinhole test does help focus my vision but to be honest, as I can see fine from my left eye, it really seems pointless to bother. I did have a really odd experience the other night though. I woke up at around 1.00am and some light was coming in my bedroom window. Moonlight or something I think. Anyway, I looked around my room and it was as though I was seeing everything through a red filter. Blinking and rubbing my eyes didn't make any difference (yes I was definitely awake). I went back to sleep and in the morning my eyes were back to normal. I'd thought that my son had put my garden lights on but when I checked, he hadn't. I have no explanation for this and it's never happened before. Is this something you've experienced? I've written to my Ophthalmologist so that he's at least aware of it. I'm not worried, just curious really. Like you, light and dark are my main problems. If it's bright sunlight it makes my sight worse and I do suffer with night blindness. Kind regards, Lioness

 
Old 07-05-2012, 11:59 AM   #9
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Re: AZOOR? Any experience?

Hi Lioness
How are your eyes at the moment? Did the red filter like vision correct itself?
I have had a check-up today and all is well (or no change, I should say!)
regards Lyn

 
Old 07-05-2012, 11:55 PM   #10
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Cool Re: AZOOR? Any experience?

Hi Lyn

Glad to hear all is well with you. The red thing only happened once and hasn't repeated so must have just been an anomaly. I have an appointment at the hospital today so will find out if I really do have Azoor or not. I'll let you know what happens but either way I still have the problem whether they can label it or not. xxx

 
Old 09-22-2012, 09:47 PM   #11
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Re: AZOOR? Any experience?

Hi there. I am a 47 year old male and I was diagnosed with azoor in my left eye in 2000. My symptoms are almost identical to yours but not as severe, I get floaters and flashes, and they are worse when I am tired or stressed. Fortunately, my blind spot is off to the side so it is not too much of an impairment.
The initial symptoms were a little different; I noticed a shimmering effect in my peripheral vision, much like the pattern sunlight will make on a wall when it reflects of the surface of a pool. After three weeks this had become a black spot with orange flashes. Steroid injections in the eye did not have much of an effect and the blind spot is permanent.
Since the initial appearance of the problem the size of the affected area has not increased, so I am lucky that way. I have a visual field test done once a year and a thorough check by a specialist who is excellent.
I am always curious about what caused this to happen; I did not have high blood pressure but I had started medication for high cholesterol several years earlier.
Hang in there, stem cell research etc. may find a treatment. Hopefully symptoms do not get worse. The irony for me is that I had very successful PRK surgery done in the early 90s and my visual acuity was great.
Glad to find info from other people on this issue, wish nobody had to suffer it though.

 
Old 11-02-2012, 07:56 PM   #12
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Daughter Diagnosed in 2008 at age 17

She complained of what we thought were floaters but upon more detailed description my husband said it didn't sound right. Luckily we took her completely by accident to a retina specialist who recognized it in minutes. My husband didn't like the diagnosis - so rare, daughter so young, and doctor was new to us and so quick to make the diagnosis. So he referred us to Dr. Anita Agarwal at Vanderbilt Eye which is where Dr. Gass that 'discovered' AZOOR was and Dr. Agarwal was his protege. After tons of more testing including ruling out any neurological issues, she confirmed the diagnosis and put my daughter on an experiemental treatment of then fairly new antifungal Valtrex and prednisone (like 40 mg!!!) several times a day for 45 days but it was just too much for a petite tiny 17 year old girl (under 100#) and gave her severe headaches, light sensitivity after about a week so she had to be taken off. But at least it did not seem to progress from initial diagnosis. Her loss of sight is mainly peripheral but does interfere with things some.

She was diagnosed with fibromyalgia and chronic fatigue syndrome in 2011 and with necrobiosis lipiodica lesions in October. Our family dermatologist told me an interesting theory back in December which he had a grant to research at one point but funding got cut. He was familiar with AZOOR and fibro and believes they are caused by a virus that we all have and while it can't be eliminated it can be controlled to eliminate the symptoms.

Well, late September we found a doctor out of state doing some studies on fibro and I got his attention throwing in the AZOOR which he was not familiar with. His theory is basically the same as what our dermatologist said. We got in to see him and after a little 'prior authorization' issue with insurance, she started the drug cocktail last week. He said to give him six months. It's no new drugs, just an 'accidental discovery' of the combination working for fibro and other conditions than what originally prescribed for. We had nothing to lose since traditional fibro is just treating/covering up the symptoms and she stays on those until this starts to kind of force the reduction of activity by the virus.

Besides the fibro, we are hoping to see some eventual reversal of the AZOOR which we have pretty much been told not to expect by Dr. Agarwal. The body has a great ability to heal itself given the opportunity and treated right so... But the necrobiosis lipiodica is considered auto-immune and they really don't know about AZOOR and fibro so let us all cross our fingers this doctor is on to something and it does all tie together - he's is only focusing on the fibro/CFS but we are holding out hope for a link. I'll try to remember to post updates as we go through this.

Last edited by Administrator; 11-02-2012 at 08:46 PM.

 
Old 11-08-2012, 04:12 AM   #13
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Re: AZOOR? Any experience?

It's so good to find people with the same experience but I am very sorry you also have this condition. I have AZOOR in my left eye with constant flashing that gets worse with stress. The night blindness makes life interesting particularly as I seem to get regular occurrences of labyrinthitis which gives me a balance issue. Although the flashing sometimes drives me crazy I am very thankful this is what I have as originally the Bristol Eye Hospital were convinced I was a very rare case of having retinitis pigmentosa in one eye which would eventually lead to blindness. Thank you for sharing your experiences as my poor husband really doesn't have a clue what I'm talking about!

 
Old 02-02-2013, 11:32 AM   #14
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Re: AZOOR? Any experience?

Anyone do anti immune therapy for azoor symptoms?

 
Old 02-02-2013, 12:08 PM   #15
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Re: Daughter Diagnosed in 2008 at age 17

Please let us know if the "cocktail" helped.
I have been told my last chance to save the remaining eye is to start drug therapy. I don't know of ant success stories.

Last edited by Flipflopper; 02-02-2013 at 12:08 PM.

 
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