UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

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

Moderators: Mike Bartolatz, kwork

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

Post by Mike Bartolatz » Wed Jan 26, 2011 9:55 am

the headache may be from vasculitis. do you have a neurologist involved or a vascular specialist. are your headaches temporal? could giant cell arteritis be the cause? are your eye pains piercing or discomfort? the steroid drops won't reach the back of the eye where posterior inflammation is present. has anyone suggested oral steroids or injection of steroids to tissue surrounding the eye?

Wish you the best,
Mike
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 26, 2011 10:19 am

Mike Bartolatz wrote:the headache may be from vasculitis. do you have a neurologist involved or a vascular specialist. are your headaches temporal? could giant cell arteritis be the cause? are your eye pains piercing or discomfort? the steroid drops won't reach the back of the eye where posterior inflammation is present. has anyone suggested oral steroids or injection of steroids to tissue surrounding the eye?
Could be vasculitis. Ibuprofen is controlling the situation at present. Spoke to the Senior Opth Consultant's secretary this morning and she has typed the referral letter to Prof Dick and just needed his signature. Just a question of waiting for an appointment. Have to be patient and deal with it as best we can at present. Neurology specialists are also in Bristol. Had nerve conduction tests done for peripheral neuropathy and they went off there for interpretation.

NHS tends to have centres of high specialty located in places where there are universities. In other areas they can cater for most needs but high specialty requirements have to be referred out. Its mainly about ensuring that they have the resources and facilities available for that specialty and moving patients to those places rather than having expensive facilities available with low usage. Its about balancing need with resource and population. West Country has low population densities so specialist facilities are scattered all, over even locally.

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

Post by Mike Bartolatz » Wed Jan 26, 2011 10:29 am

usually specialists have open periods in their schedules for emergency appointmens. it might be that professor Dick could expedite the appointment for you as you have posterior segment involvment with headache which is signficant combined with your renal disease and vasculitis.
I am very concerned about you sir and pray that you can get expert care quickly. I do understand the frustration that you have in getting appointments set as I get my care from the Veteran's Administration health care system here in the USA which is similar to the NHS in the UK in getting specialist care approved. remaining patient is difficult at times.............

wishing you the very best,
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 » Sun May 08, 2011 2:22 pm

Hi after reading so many posts of how people are struggling with uveitis Iv decided to post my lifes little drama on here.I am no where near in such awefull condition as alot of people on here but equally frustrated with the NHS.
I am a 30 year old male,ex military and still fit and healthy.About 14 months ago I had a bout of uveitis and struggled for 3 months to get it back under control,I have it in my right eye which has know got a funny shaped pupil and I seem to have got a very dark cheek bone which without exaggerating I feel like I have lost some of the muscle tissue in it.I have had scans,Pictures taken of the inside of the eye,X rays,blood tests the lot, and been told there is no cause for it I just have it.

I find this very hard to believe as its over a year that iv had it and its not going away.I am able to control it with one 5milligram tablet a day but if I miss it by midday I am feeling the start of a flare up. My so called specialist barely makes eye contact with me as im rushed in sat down spoke to briefly then sent on my way for another couple of months with more tablets.I have spoken to my GP about this to make sure its not just me getting frustrated and he agrees to go for a second opinion.Am I wasting my time doing this as I feel I will just get sent 2 rooms to the left and seen by one of her Specialist friends????

So as it goes presently I have a backpain which is keeping my awake all night which I cant help think is associated, I have seen chiropracters to my own expense and they cannot fix it,I have pain in a couple of my knuckles, and constantly struggle with general stiffness.My eye is still a funny shape and I get the odd pain in the eye which is normally photophobia from driving early morning shifts( lorry driver).What do I do??? Does it just go after long periods? am I going to be suffering with this forever?? All I get from the specialist is "some do, some dont" Can anyone help or point me in the right direction? all comments appreciated

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

Post by Mike Bartolatz » Mon May 09, 2011 12:39 pm

there are over 85 causes of uveitis. some have biological markers but it can take a couple of decades, yes decades before they appear in the blood stream so that they can be measured.
a mishapen pupil would indicate that the iris is partially stuck to the lens. iritis in one eye with allot of inflammation causing adhesions and which often has high pressure inside the eye and a history of cold sores on the mouth or nose is the Herpes Sx virus. this is under diagnosed. anti viral meds would be needed to put the virus back into hibernation. the herpes zoster virus is also a potential viral cause that causes chicken pox. there are many other things in third world countries that should be explored as well such as Shigilla (sp), Malaria, TB, yeasts and molds too.
ankylosing spondylitis can be related through genes besides the HLA B27 gene. it can be related to IL23R, ERAP1 and IL1R2. these genes can also appear in psoriasis/psoriatic arthritis, autoimmune thyroid disease, breast cancer, Behcet's disease, Systemic Lupus Erythematosus and are suspect in other diseases.
Crohn's disease and ulcerative colitis have GI and arthritis components similar to Ankylosing Spondylitits.
you indicate that you are in the UK, Professor William Ayliffe in London/croydon would be the best specialist to figure this out for you. he can see you privately and/or through the NHS. his contact information can be found at http://www.uveitis.org in the PATIENT information section of the site.
Professor Dick might also be able to help but he doesn't see anyone privately so you would need a referal through your GP.
to help you get through the NHS, I suggest you join the support group at http://www.uosg.org which has a UK forum. they will provide assistance for you.
I moderate forums for the Ocular Immunology and Uveitis Foundaton as well as this site and I can also help you there.

I hope this helps,
Mike Bartolatz

PS: if you email or call professor Ayliffe, tell him that I sent you from DR Foster's support network here in the USA. he studied in the USA under professor Foster at Harvard. MSB
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bingo
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Re: UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post by bingo » Mon May 09, 2011 2:18 pm

Thankyou very much for your help

I have just showed your reply to my wife and she has reminded me of something that happened to me years ago,I went to the doctors with what I thought was conjunctivitus in my eye which turned out to be coldsore in the eye or the herpes virus. I have had 2 or 3 bouts of it but then it went and I have never had it since. I will be sure to mention it to my GP and see if he can refer me to the people you have mentioned.Once again thankyou for your help,and i will keep the site posted of further developments

Cheers.

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

Post by Mike Bartolatz » Wed May 11, 2011 12:41 pm

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
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 » Sun May 29, 2011 4:19 am

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

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

Post by Mike Bartolatz » Tue May 31, 2011 10:18 am

Rob.
Thanks for your help!

If you would like, I can have kevin add you as a moderator to help out.

Take care my friend.
Mike
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 Jun 01, 2011 3:22 am

Mike Bartolatz wrote:Rob.
Thanks for your help!

If you would like, I can have kevin add you as a moderator to help out.

Take care my friend.
Mike
Pleasure Mike.

How are you doing? Not seen any updates but I hope you have seen the endo and getting some control on the blood sugar levels.

Thoughts and prayers with you every day

Very best to you for continued progress.

Rob

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

Post by Mike Bartolatz » Wed Jun 01, 2011 12:12 pm

Rob,
i went to the Endocrinologist yesterday who changed dose of Lantus to 40 units at bedtime and stayed with the 5 units plus sliding scale of Novalin R until a short acting Insulin is approved by the VA. I'll have to get nutrisional training to calculate carbs again as I have to take 2 units of the short acting insulin per 10 carbohydrates. didn't need to do this with oral meds and the other forms of insulin. he is also taking me off of the oral medication glyburide but I contine with metformin at 1000 twice a day.
life is getting complicated with too many individuals stirring the pot for me. each tugs in separate directions making proper drug care difficult for me to remember. My memory has been trashed by the TIA's. I have to write everything down as I can't recall stuff. I used to have a memory that could recall stuff after just one episode. i think I've lost 30 IQ points too putting back to about 100 to 110. I know some of this is from getting OLD but not all of it.

so do you want to help out here as a Moderator?

I could really use some help. Mary is writing for a living now and rarely comes by to help out. I never know when I'll have to go back into a hospital with the TIA issue and there isn't anyone to back me up. Plus, you are in the UK and when members post you can help them get throgh the NHS system.

take care my friend,
mike
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TigerOC
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Re: UK MEMBERS, POST HOW YOU GOT TO A SPECIALIST HERE

Post by TigerOC » Wed Jun 01, 2011 5:04 pm

Mike Bartolatz wrote:Rob,

so do you want to help out here as a Moderator?

mike
Mike, I am happy to help in any way I can. I am only just getting to grips with these conditions. I have been asked to do drug/treatment research for Olivia's forum. So it may mesh well with this.

I also coach cricket here in the UK during the summer months.

Sounds like you have been through the "honeymoon" phase with the Islets of Langerhans and they are no longer responding to drug stimulation. Again this can be associated with autoimmune attacks on these cells. Getting the insulin levels correct can be difficult early on. I think once you can get the right levels of long acting insulin and then judge how much short acting form you need it will get easier. Diet and understanding the carbohydrate content is the most difficult part. Whilst the islets are still producing small amounts it is difficult.

All the best,

Rob

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

Post by Mike Bartolatz » Mon Jun 06, 2011 12:18 pm

Rob,
if you want information, there is about as much as one can find at http://www.parsplanitis.org I've even cross linked many subjects and you might be able to use this information for Olivia's site. PP forum is part of DR Foster's support sites and he trusts me to post only information that professionals would find appropriate. He does 'peer review' of content that I post there.

I'll send Kevin a note to contact your regarding becoming a moderator here. I'm willing to help you as well in any support activity.

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

Post by Mike Bartolatz » Mon Jun 06, 2011 2:35 pm

Rob,
kevin is adding you as a moderator.

take care,
mike
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 » Mon Jun 06, 2011 3:39 pm

Okay Mike.

How did you get on with the Endo last week?

All the best, I hope things are coming together.

Rob

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