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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UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post by Mike Bartolatz » Sat Mar 22, 2008 9:44 am

II thought I would start a thread for our UK members to discuss how they worked their way through the NHS to see an Ocular Immunologist. we have allot of people from the UK who ask questions about this topic as well as how they got Immunomodulation (chemotherapeutic drugs used to retrain their immune systems to stop attacking their eyes).

So, this is YOUR thread. please continue to join in at other forums too as I can sure use the help.

Wish you the very best,
Mike Bartolatz
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Biggs
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Post by Biggs » Wed Aug 27, 2008 10:23 am

I have seen many Specialists over the years, the way that i got in touch with them or found out about them was through alot of research using the Internet and ringing around alot of places to get names and started to go from there.

I did realise that alot of doctors, that i was under at the time really didn't like the fact of us looking for alternatives, which i suppose is quite understandable.

Currently i am Under Dr. Ayliffe, its a long way to travel but it is worth it. We found out about him near the same time we decided to go and see Dr. Foster, but where we didn't know about him or his history we decided to go and see Dr. Foster first and then he recommend Dr. Ayliffe with out us even mentioning his name.

If you do feel that your condition is not making any progress, i do strongly advise that you try a seek the best help you can and do the most research you can so you and your family fully understand your disease and understand what if best for it then you can start going in the right direction.

fionacsmithy
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Specialists

Post by fionacsmithy » Tue Sep 02, 2008 3:15 am

I too have seen a number of opthalmologists in Scotland. Actually reaching the Consultant takes a while and I have only just seen mine for the first time in 8 months constant treatment for my last flare up.I have only seen 2 other consultants a couple of times each in my 27 years as an iritis sufferer.The blood test results I had done 9 weeks ago still weren't available.Fortunately my eyes are very comfortable right now and the vision is as good as I get....could still drive if I wanted to.I am using FML once a day now and hope to stop next week I had not heard of this drug before..I have been offered a referral to the Uveitis Clinic in Glasgow next time I have a flare up.Seems the Dr there collects histories for Prof Forrester in Aberdeen.I am glad I feel well....waiting for test results is stressful.
2ys u r,2ys u b,I c u r 2ys 4 me!

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

Post by Lisa_Marie » Sat Dec 20, 2008 1:27 pm

It took me several years to get to see a specialist. I had returning uveitis, several times a year switching between the eyes. Every few months I would spend the day in the Eye casualty department at Dudley Road Hospital. I never had any blood tests or x ray, when one doctor would arrange for these to be taken, the next doctor in causalty (at my follow up) would cancel them. My GP did not want to know, and would always send me back to the hospital. This went on for a few years. On one of the trips to the hospital I contracted the adnovirus on top of the Uveitis, and my eye became scarred. I could no longer study/work/drive and became very worried.

In desperation, I emailed a specialist direct. I searched him via google. I explained the time span, nature and experience of my eye situation, along with the treatment to date. I poured out my stress, fears and begged him in the email to tell me how to get to see him. He was fantastic! He emailed me back within a few hours and then phoned me and asked for more details. Following the phone conversation, he arranged for me to come to his office the next working day and made time to see me. He pulled together my medical files (I had several as the hospital kept losing them!) When I went to see him I was once again at the start of a new flare up. He took on my case! :D He could treat me as I Iive within the health authority catchment area. Since that time, the specialist (Phil Murray) sees me every four months. I started seeing him in April 2007, and have not had a flare of uveitis since. ( it used to be about 4/5 flares a year prior). My eye sight is improving, not perfect, but I can study again, read, drive ... he gave me back my ability to live life again without eye stress!

So how I got to a specialist.... I skipped the normal NHS procedures and went direct to him myself and begged and pleaded :) It worked!

alisonbatchelor
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Re:

Post by alisonbatchelor » Sun Nov 08, 2009 5:32 pm

Biggs wrote:I have seen many Specialists over the years, the way that i got in touch with them or found out about them was through alot of research using the Internet and ringing around alot of places to get names and started to go from there.

I did realise that alot of doctors, that i was under at the time really didn't like the fact of us looking for alternatives, which i suppose is quite understandable.

Currently i am Under Dr. Ayliffe, its a long way to travel but it is worth it. We found out about him near the same time we decided to go and see Dr. Foster, but where we didn't know about him or his history we decided to go and see Dr. Foster first and then he recommend Dr. Ayliffe with out us even mentioning his name.

If you do feel that your condition is not making any progress, i do strongly advise that you try a seek the best help you can and do the most research you can so you and your family fully understand your disease and understand what if best for it then you can start going in the right direction.




So did you manage to see Dr Ayliffe on the NHS or did you have to go private? How do you get a referral that is miles from where you live, especially if you are already under the specialist eye department of your local hospital? If you had to go private, what sort of costs are we talking about?
alison batchelor

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

Post by Mike Bartolatz » Sun Nov 08, 2009 6:48 pm

Alsison,
go back to Biggs' original note, and see that his name is in BLUE, click on it and then send him an email/message and he will be able to answer you. it has been awhile since he posted

you can also contact Mr Ayliffe's office for information and I believe he has an EMAIL address in his contact information that I posted for you.

if your local opthalmologist won't help you, your PRIMARY care physician can get an appointment out of your local NHS system. somehow people accomplish this all the time from all over the UK.

it is aparent that your local eye hospital only knows how to use corticosteroids to treat uveitis and recurrent uveitis will over time lead to major vision loss as will the steroids they are using. Steroids are needed to stop an outbreak of iritis but then there are other drugs that can be used from NSAIDs to DMARD drugs etc to finally get things STOPPED.

wish you the very best,
Mike

Please tell Professor Ayliffe's office that DR Foster's support group in the USA has sent you to him.
you can use my name as he should be familiar with it by now. I moderate forums for the Ocular Immunolgoy andUveitsi foundaton here in the USA for Dr Foster. Mr Ayliffe trained under DR Foster here in the USA at Harvard Medical School.

wishing you the very best,
Mike
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TigerOC
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Re: UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post by TigerOC » Mon Jan 10, 2011 11:51 am

I have had my first brush with uveitis at 60.
My case is unusual and seems complex. After many weeks I was diagnosed with systemic vasculitis by a consultant in the Dept of Medicine after suffering bouts of extreme muscular pain followed by peripheral neuropathy. I also had rapidly deteriorating kidney function. Whilst being investigated I developed smokey vision which was ignored and after 5 days I saw an optician and he detected anterior uveitis.
I have been cared for by West of England Eye Hospital for the uveitis and have been referred to Rheumatology.
I have suffered a second flare of iritis. Opthalmology are only interested in treating the active iritis and are not concerned about long term care. I will have to see how I progress with the Rheumatologist. He is young and receptive and hopefully I can use extended resources of specialists in uveitis.
Rob

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

Post by Mike Bartolatz » Mon Jan 10, 2011 12:29 pm

Rob,
please have the rheumatologist refer you to one of the specialists on the lIst at http://www.uveitis.org

there are several autoimmune diseases which present with vasculitis and uveitis. there are various genes related to these that can be checked for. I am very concerned as it is unusual for someone your age to present with Ankylosing spondylitis and uveitis. Usually AS is diagnosed in a younger individual. have you been checked for Clotting factors such as for Amyloidosis? to you get temporal headaches?
SMith antibody? RF factor? Takayasu's arteritis occurs in people over 60 for example. rarely Systemic Lupus Erythematosus has presented in individuals over 60 which has kidney disease and uveitis and vasculitis. amyloidosis can also appear and anti cardiolipin antibodies should be checked for.
the vasculitis and uveitis are most likely linked in some fashion,

wish you the very best,
Mike
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TigerOC
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Re: UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post by TigerOC » Tue Jan 11, 2011 8:54 am

Thank you for the reply Mike.

The major concern of all the professionals looking after me at the time this was all happening was the rapidly deteriorating kidney function without any of the expected causes. I think the major focus was at what point would dialysis be required.

Blood tests were all coming back negative apart from low level immune response. Initially a consultant asked me whether I was perhaps suffering panic attacks. It was some 2 weeks after things calmed down that it was suggested that I had an auto-immune disease because iritis was in the picture. I queried the possibility of an auto-immune disease at the beginning because I remembered that dental infections have been implicated in diseases like rheumatic heart disease. I kept coming back to the dental extraction but was ignored. The same happened when I was telling them that there was a problem with my eyes and my vision felt like I was in room filled with steam. Perhaps a criticism of modern doctors is that they rely too much on lab tests and don't LISTEN to what they are being told by the patient who probably knows their own body best.

I have sent an email to Andrew Dick in Bristol summarizing what has happened and background medical info.

The NHS supplies superb services to the population at large but is very frustrating and difficult to work with as an individual with a complex problem. You have virtually no access to individual specialists. I have been seen by a different eye specialist every time I have been and sometimes notes of consults done a few weeks before are missing. To add to the problem at present is the fact that I have no fixed GP either. The GP that handled me initially has gone on long leave and I am seen by which ever GP has a slot when I need to be seen. The last GP I saw has never seen a patient with an auto-immune disease and knows nothing about auto-immune disease. She admitted I probably know more than she does. Sorry about the rant but it can be very frustrating when you are sitting in front of someone who is there to help you and they are telling you that they don't have the faintest clue what is wrong with you and that they have done all the tests and they still cannot find anything wrong.

I suggested the possibility of AS from reading about associated conditions. Since I was 19 I have never been able to stand for more than an hour. My pelvis seems to lockup and if I try to sit down, it is very painful. I cannot sit for long periods either. I have to keep moving around. I have also had neck problems for 20 years. The Rheumatologist is skeptical of AS because he feels I would have had an iritis flare at a younger age. The MRI scan should resolve this. I have had a test for HLA B27 and will find out when I see him next.

I don't suffer headaches at all. The only other eye problem I have had was when I was 26 and had a small retinal haemorrhage. The tests indicated that I had low Factor 9 (Christmas disease or pseudo haemophilia) but an elevated fibrinogen level seemed to compensate and make my clotting time normal. The episode was blamed on pseudo-ephedrine that I was taking for a cold at the time. The eye specialist felt that perhaps the pseudo-epidrine had elevated blood pressure enough to cause a bleed in a weak vessel in my eye. Not had a problem since. Not had rashes associated with Lupus and don't suffer with non-painful mouth ulcers. The consultant physician was fairly convinced that some bacterium in my tooth has triggered the vasculitis.

I will have to see how this all develops in the next few months. I am very concerned about the possibility of further vasculitis because this time perhaps I have been lucky. If it hits a lung or heart and the kidney, maybe I won't be so lucky. That's apart from going blind in the meantime :)

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

Post by Mike Bartolatz » Tue Jan 11, 2011 2:04 pm

you do have a bleeding issue and perhaps a clotting factor issue which should be explored deeper along with the kidney disease which might make alternative treatments difficult to explore because many of the drugs impact the kidneys.
the retinal bleeding needs to be explored too as this can be related to a history of Cystoid macular edema or new blood vessel growth, perhaps posterior uveitis was present for example and it was missed. sadly everywhere in the world has problems with uveitis and ocular inflammatory diseases, getting a dignosis because few doctors understand the importance of treating this stuff aggressively nor do they know what it is related to. with over 85 autommune diseases and pathogens as possible links to a cause, it is difficult to treat or explore possible conditions without having an Ocular Immunolgoist involved.
please ask DR foster about the Christmas Disease, factor 9 condtion and it's possible link of ocular inflammatory disease processes at his forum at http://www.uveitis.org
If necessary, get an appointment out of pocket with the Specialist in Brisol or with Professor Ayliffe in Croydon/London.

corticosteroids can lead to bleeding of the eye. with your clotting isssue watch for signs such as big black dots in your vision or a veil coming over your vision and then blocking it. the surface vessels of the eye can also bleed causing subconjunctival hemorrhages. NSAIDs can also cause bleeding in the eyes.

Wish you the very best,
Mike Bartolatz
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TigerOC
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Re: UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post by TigerOC » Wed Jan 19, 2011 7:42 am

It's 2 weeks since the MRI and have not received any notification of follow-up for this. Saw the GP today to find a way forward because the Rheumy dept can only arrange an appointment in 2 months time.
GP has the MRI reports which is clear and the HLA-b27 also clear so they conclude no AS. Explained to her that I am still being treated for an active flare and I know from aching joints and transient 'flu like symptoms that inflammation is still present. She says the rheumy report basically says that since the vasculitis has subsided and kidney function is normal and iritis is being cared for by ophthalmology there is not much more they can do.
I told her that I have contacted Prof Andrew Dick in Bristol and he is prepared to see me with a referral from the Rheumy. She has asked current Rheumy to refer me. Hopefully can get some kind of control.
I really concerned about another flare of vasculitis and the damage to my eyes.
Rob

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

Post by Mike Bartolatz » Wed Jan 19, 2011 9:53 am

Boy do I pray the vasculitis remains under control and I agree that you need the appointment with Professor Dick in Bristol. I know several people who have been treated by him with good results. He will know the need to treat the vasculitis agressively.

wish you the very best,
Mike
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TigerOC
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Re: UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post by TigerOC » Tue Jan 25, 2011 10:32 am

I saw an eye specialist this morning for 5 week treatment check. While the anterior inflammation has cleared there are now signs of posterior inflammation which he was concerned about.

Discussed Prof Dick with him and he agreed that it is time for a specialist in the field to see me. Had a phone call a while ago to say that the senior consultant agrees I need to see a specialist in the field and they are referring me to Prof Dick.

Rheumatology says MRI results are clear and no AS. Am positive for p-ANCA and negative c-ANCA however PR3? results are negative so he is not sure whether vasculitis is in the picture.

Hopefully will make progress with getting some kind of idea of whats wrong and a treatment plan.

Rob

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

Post by Mike Bartolatz » Tue Jan 25, 2011 12:38 pm

If I recall correctly you had contacted Professor Dick. see if his office can expedite an appointment for you.
what is involved with the posterior segment? Vascularization? retinitis? cystoid macular edema? cells in the posterior vitreous?

Wish you the best,
mike
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TigerOC
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Re: UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post by TigerOC » Tue Jan 25, 2011 3:17 pm

Mike Bartolatz wrote:If I recall correctly you had contacted Professor Dick. see if his office can expedite an appointment for you.
what is involved with the posterior segment? Vascularization? retinitis? cystoid macular edema? cells in the posterior vitreous?
I have notified Prof Dick and his secretary today, of the situation and he responded with "hope to see you soon".
The specialist wasn't that forthcoming with info. Just the comment that there is inflammation. He obviously discussed it with the senior consultant because I received a phone call from his secretary to increase the dose of Prednisone drops more than I had been told at the consult. He did say that vascularization was not affected. I am assuming that cells are present in the vitreous. Pressures were normal.
My eyes have been painful and have had headaches for the last few days. I have been in taper off and due to finish today and hence the appointment today.

Rob

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