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Author Topic: Playing Russian Roulette again...  (Read 1454 times)

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Rods2

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Playing Russian Roulette again...
« on: 13 September 2018, 04:55:53 »

...with my eyes. :( :( :(

Each time when I get Uveitis in my eyes, I spin the barrel on a metaphorical revolver and pull the trigger where I have a 1 in 3 chance of a permanent lifelong bad partially-sighted to blind outcome. :( :( :(

Last time  it happened I lost 80% of the vision in my right eye and I have now got it as a result of a mild summer viral infection after 2 uveitis free years again in my good left eye. :( :( :(

The good: Each time I get this happening I understand the condition more and the symptoms, can visit the doctors quickly, they react quickly, and I will hopefully have a good outcome. This time I only have the infection in the front part of the uvea and I'm on an aggressive treatment plan of steroid drops every 4 hours (6 times a day) in my left eye for a week, before it will hopefully improve and they will start tapering the treatment. I then have to apply counter drops twice a day for the first  few days to counteract the raised pressure caused by the steroids (same as glaucoma raised eye pressure), which have the further side effect of pupil dilation with blurred vision for about 4 hours twice a day.

The bad: Apart from the obvious risk to my eyesight is that the NHS have no relapse guidelines for recurring symptoms, you are on your own here and last time the symptoms were there and I didn't realise until my eye had a slight dark shadow as it was destroying my optic nerve, hence the 80% sight loss. :( :( :( The problem is that the symptoms gradually come on and are not easily seen or diagnosed where in the early stages they are so subtle. This time: A slight white colour hue with computer black writing turning slightly grey, slight mottling when squinting at a white background, slight noise like a sightly poor analogue tv signal, slightly poorer focus where I've gone from borderline x2.50 to x3 reading glasses and the least subtle of all the symptoms that sometimes during the day bright sunlight or lights have an obvious white hue and white halo around a light source which got the alarm bells ringing this time as this was the most noticeable last time. I shall write to the consultant suggesting that they should provide patients with things to look out for follow up notes as this could potentially save other patients eyesight. :y :y :y

As the combination of problems I have are quite rare 2-5 per 100,000 per year there is very little understanding or research on it compared to other eye conditions and limited unapproved experimental or approved treatment. :( :( :(
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STEMO

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Re: Playing Russian Roulette again...
« Reply #1 on: 13 September 2018, 06:29:07 »

Just had a read up on this condition, very nasty and very scary. From what I could glean from the nhs website, it's more a case of trying to manage it when it occurs rather than curing it. There are a lot of 'ifs', 'ands' and 'buts'.
I hope the steroids and immunosuppressants keep working for you. Try to stay positive, I would imagine it would be quite easy to get depressed about the whole situation.
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Sir Tigger KC

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Re: Playing Russian Roulette again...
« Reply #2 on: 13 September 2018, 08:50:17 »

Do you regularly go to the opticians for checkups Rods, as I was wondering if your condition shows up on the eye scan, so maybe you need to monitor your condition better and go for checkups more often.  :-\  Privately if needs be.  ;)

I hope you get on top of this as it can be very depressing when your health starts to fail, and as STEMO says it's a scary thought losing your eyesight.  :(

All the best!  :y
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Lizzie Zoom

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Re: Playing Russian Roulette again...
« Reply #3 on: 13 September 2018, 09:35:13 »

That all sounds very nasty Rod! :o :o

Hope all eventually goes well for you :-* ;)
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Rods2

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Re: Playing Russian Roulette again...
« Reply #4 on: 13 September 2018, 10:03:49 »

Regular visits to a hospital eye clinic where they were hoping to sign me off permanently in October. I suspect I will now have another 2 years of 3 monthly visits gradually tapering down to 6 months. Where I type 2 diabetic I also have an annual eye scan a photograph of my retina which ironically is today. I don't know if they will be able to do this now but I will still attend.

I need to get permanent glasses but where my vision varies so much from day-to-day I suspect this is going to take several expensive iterations as I'm going to need bifocals as part of seeing if I can drive again, where I don't at the moment. Distance glasses for seeing the road and a lower reading part to see the instruments.

Fortunately, I've always had a positive outlook on life where my glass is always half full, keep myself busy and have never suffered from depression. If on the odd occasion I do feel a bit sorry for myself, I just think of all those worse off than me and all the positive things I have and have done in life, put some good music on and I find this works really well as a great positive pick me up. :y Something my nan taught me as a child and I've also seen the very destructive side of depression where my mum suffered from deep depression most of her adult life. This not only ruined her life but caused major problems for all those around her and I promised myself this I would always avoid as there is nothing bad in life that wouldn't be made worse by being depressed. Obviously, if the worst happens to my good eye then I don't know emotionally where this would lead to, so I'm not going to think about it, that would be something to worry about only if it ever happens. :'(
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2boxerdogs

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Re: Playing Russian Roulette again...
« Reply #5 on: 13 September 2018, 10:19:25 »

I realise how you must be feeling, I had a scare almost 12 months ago terrible double vision which of course meant no driving, to cut a long story short it was a side effect of some other eye treatment which I have been having for years with no problems, still very scary having to have brain scans & various other tests. We all take things for granted & it is not until you experience the problems you realise how lucky we are ,really hope things turn out well for you & you get some relief from this condition.
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Kevin Wood

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Re: Playing Russian Roulette again...
« Reply #6 on: 13 September 2018, 11:42:03 »

Sorry to hear this, and I hope you can shake it off without any further permanent damage. :y
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Doctor Gollum

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Re: Playing Russian Roulette again...
« Reply #7 on: 13 September 2018, 13:49:23 »

Have you been to Moorfields?
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BazaJT

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Re: Playing Russian Roulette again...
« Reply #8 on: 13 September 2018, 19:52:36 »

Can't begin to imagine how worrying such a thing could be.At least you are now able to recognise the symptoms/onset and get help quickly plus your positive outlook can only be a good thing.I hope things can be sorted for you :y
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Rods2

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Re: Playing Russian Roulette again...
« Reply #9 on: 13 September 2018, 21:56:04 »

Have you been to Moorfields?

No, but Frimley Park Hospital have a very good eye clinic, including a top teaching/research consultant who is also a professor, who I have seen once and a second very good consultant who I have seen several times. The treatment I have received there has mostly been good to excellent. The trouble is that the combination that caused my nerve damage of uveitis->papillitis which is an optic nerve infection which caused swelling and bleeding. Your optic nerve passes through a socket in the back of your eye. For most people there is a small gap between the side of the socket and the optic nerve, but for a small percentage of people, which is down to genetics, the optic nerve is tight against the side of the socket which is what I've got. This is not normally a problem except is you get an infection in the optic nerve that causes it to swell, the tight socket means it can't anywhere so it destroys a percentage of the 1.2m optic fibres that make up the nerve and is called an optic neuritis, hence a grey cloud in the middle and right of my right eye. I get annoying interference fringing in the right periphery of the eye where some of the optic fibres still work but many don't. When I'm working or reading I wear a patch on my glasses to shut out the right eye otherwise I squint and the eye gets very sore very quickly and my reading/writing vision is better with just the one eye, but when looking at a distance I find it sightly better with some 3d perception to keep the eye uncovered.

https://www.mayoclinic.org/diseases-conditions/optic-neuritis/symptoms-causes/syc-20354953

Where my dad had progressive Multiple Sclerosis from age 50 and susceptibility does run in families I've had several MRI scans which show thankfully that I'm not suffering from this. :y

Several US universities are working on being able to regrow optic nerves that have commonly been destroyed by much more common glaucoma, so there is a big market for this and they set a target in 2015 of 10 years to solve the 3 major problems. The last time I checked they had solved 1 of the 3 and were working on the other 2, so it is not without longterm hope.
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Doctor Gollum

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Re: Playing Russian Roulette again...
« Reply #10 on: 13 September 2018, 22:30:03 »

It sounds like they are doing everything they can then :y

Only mention Moorfields as Mum has been a patient their since the late '80s. :y
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Rods2

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Re: Playing Russian Roulette again...
« Reply #11 on: 14 September 2018, 01:15:45 »

It sounds like they are doing everything they can then :y

Only mention Moorfields as Mum has been a patient their since the late '80s. :y

At one point during my severe adverse reaction to the flu jab and misdiagnosed eye problems by 3 gps that came very close to making me permanently blind, Once referred to FPH at 3 minutes to midnight on the atomic clock with my left eye (It was officially classed as blind as I could see no detail only light and dark - if you can't read the top letter on an eye chart you are officially blind, I couldn't read their super sized letter either) and 7 minutes on the right one as I knew that within 24/48 hours it would be the same as the left after initial treatment on the very worse case of uveitis that the doctor had ever seen along with the eye clinic consultant, when I already knew I was in deep trouble, but 5 hours of intense treatment saved my eyesight, but p*ssed the doctor off as he had to stay late to treat me and was always unprofessionally rude afterwards. The same doctor did discuss sending me there as a rare case and then decided not to. This may have been due to one of their young doctors being very proactive over my conditions, finding out that getting uveitis in one eye is rare in both at the same time almost unheard of, except when caused by a vaccination and it was him that put the yellow notice into the vaccine company. He was very much at the top end of excellent and I used to like it when I was on his daily list as I could ask lots of questions on my condition and get good answers and I could understand more. :y

I was expecting to get signed off from the hospital in October and then start a no-win-no-fee case against the GP's for negligence. The reasons I'm not going to discuss on here as it will be sub-justice and the vaccine companies have money aside funds to give standard payouts in cases like mine and again I will discuss in the future what has probably happened.

Keeping things in perspective vaccines typically stop bad disease outcome by 100 to 1000 to 1 for, against being unvaccinated, so would I have other vaccinations again? Yes, I already have successfully after reading up about the pneumonia vaccination and had no problems. Will I have a flu vaccination again, not with the current technology, where I'm in the 1 in 1m-2m life changing adverse reaction numbers, but also because the effectiveness of the flu vaccination is so poor especially as the NHS to save money cover less strains than most other countries. Cover can be as low as 1 in 3. :o Just remember very, very safe is not totally safe, but so is not every heartbeat as one day it will stop!
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