UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post here to exchange iritis general information and support with others.

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

Re: UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post by Mike Bartolatz » Tue Jun 07, 2011 11:46 am

The endocrinologist is changing from intermediate acting insulin to short acting insulin, stopped oral glyburide but kept metformin as my pancreas is still making insulin within normal range but my body needs something to be able to use what I make. I go back in about a month to see him. hopefully the Veteran's Administration will approve this type of insulin which is not a normal type they prescribe.
I also take long acting at 40 units at bedtime. I'm still having some problems with glucose which ping pongs all over the place. I am counting carbs and behaving.

I go to a dermatological appointment on thursday to figure out why my ears are peeling and to look at a mole on my shoulder that is also peeling.
will get him to take a look at a rash on my legs that might be dermatomyositis. started out as red and itchy bumps that now look like freckles on my lower legs. the doctor said they looked Vascular but didn't refer for consultation about a year ago.

take care,
mike
Mike Bartolatz
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bingo
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Re: UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post by bingo » Fri Jun 17, 2011 10:23 am

Mike Bartolatz wrote:A trial of
ayacycovir might prove the key to CONTROL of viral uveitis since the herpes Simplex virus could easily be the cause. once you have the virus it hides out on a nerve and can re appear later on as uveitis without sores on the mouth or nose. then it travels down a nerve and into the eye.
mention this to your GP who could order the anti viral med. if this works, then you would remain on the anti viral med for many years to come. sometimes a drop of corticosteroid is also required along with the anti viral med. make the appointment with professor Ayliffe. out of pocket payment if needed. if it is uveitis related to this virus, it can get to the retina where it can quickly cause acute retinal necrosis, (death of cells of the macula from which you see). this is why I encourage you to quickly make the appointment, mention to the person making the appointment that Herpes virus could be the cause and to expedite an appointment.

Wish you the best,
mike
Hi Mike

Its been a while but I had my appointment yesterday so i thought i would give a quick update, Reference to our previous conversation about the herpes simplex I tried to get hold of my specialist before my appointment was due and ask if I had been tested for it.I was told by the secretary that all that will be discussed when I have the appointment.Clearly too busy to spare me any time.
So I arrived yesterday and it was probably the best visit I have had, Im not sure how,where or when but somebody had clearly shot a rocket up the arse of the specialist.I recieved a full explanation of why I havnt been tested for Herpes simplex,given a much better explanation of the whole build up of my situation up to now.Long story short I left with a prescription of antiviral tablets (ACICLOVIR) and a plan of coming off the prednisalone if the drops work.Oh and a smile on my face.So it seems a firm boot to the rear has worked.I have a month until I go back so i will keep you posted cheers.
Last edited by bingo on Tue Jun 21, 2011 2:10 pm, edited 1 time in total.

bingo
Posts: 4
Joined: Tue Apr 26, 2011 1:17 pm

Re: UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post by bingo » Fri Jun 17, 2011 10:32 am

TigerOC wrote:Hi Bingo,

I have also been down this road recently.

Could you tell us where in the UK you live. There are 4 specialist units in the UK that treat uveitis and since your GP also thinks you need referral this will help get you into one of the units.

The specialist units are in Aberdeen (Scotland), Birmingham, Bristol and London (Prof Ayliffe). You would need your GP to send a request to the consultant looking after you for referral to one of these centres. Your GP cannot refer you because they are tertiary centres and only your consultant can refer you on. They don't like it because they get found out.

There is also another support group in the UK;

http://www.oliviasvision.org/

There are some ladies there that have contact withe specialists in these units and can organise referral in severe cases.

Regards

Rob
Hi Rob
Thankyou very much a good bit of info.Iv just had my appoinment and someone has got things rolling for me somewhere.Iv been treated totally different and come out of that place quite happy.In answer to your question I live between manchester and Liverpool so Birmingham would have been my best option.Im going to hold fire for now as I am on a good route to improval but thanks to Mike and yourself Im armed with all the right information I need if things change

Cheers Andy.

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

Re: UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post by Mike Bartolatz » Fri Jun 17, 2011 1:12 pm

Andy,
I hope that the antivirals work for you but please remember if they do keep your eyes quiet, you will have to stay on them, not taper off in order to keep the herpes sx virus from becoming active. if it does and it gets to the back of the eye it can quickly cause Acute Rentinal Necrosis, ARN and severe loss of vision or blindness can occur. you may also require a drop of steroid every day too.
the Herpes viruses are under diagnosed as cause for uveitis. they can also cause problems with conjunctivitis and Scleritis and problems with the cornea so this is why the steroid and the antiviral need to be taken for life I am sad to say.

I am curious as to how the specialist became mor co operative and initiated a trial of steroid without an ocular immunologist involved. this is a relatively rare occurance anywhere from my adovacy work online here and at other sites.

Wish you quiet eyes,
mike
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Boroboy
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Re: UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post by Boroboy » Fri Feb 22, 2013 2:21 pm

I live in the U.K. I also have seen Dr Ayliffe at London around 4 years ago. I followed links from this website, my G.P referred me at the time. As I live within the North East part of the U.K. Dr Ayliffe based at London. Not sure if the G.P referral route is possible now. I think it is possible for your local Ophthalmologist to refer you.

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