was the doctor right?

Meduza78 · Post by **Meduza78** » Wed Sep 03, 2008 12:40 pm

i have got another attack of iridocyclitis (just the same night as i introduced myself here couple of days ago, funny random, really).
when i had it last time and went to be checked on my appointment, the doctor said that time that if it comes back in a short time, they will search for the reason that is causing this problems.
but in several days i got it again. when i went to the same hospital, a different doctor said, that the previous treatment was not sufficient and gave me more medication and instructed me to more frequent use of drops for the first two weeks.
previously i was taking maxidex 4x for first week, 3x for the second, 2x for the thirst and once for the last one.
now i am the same drops trying to take every 1 hour for the first week, every 2 hours for the second one, and follow the previous instructions then.

and now i am asking: this second doctor said, that they will NOT search the reason, because it behaves the usual way, nothing new in the story, and the eye seems to be ok, and i feel fit. he said, that if there will be something new in the symptoms, that could harm my eye or so, THEN they will do more. was this right? when i asked him, why this comes back again and again and they do not search the reason, i got the answer that this is how my body react on my eye.

i am also taking drops for relaxing the iris for next two weeks.
when i had this disease about the third time (cca. 3 years ago), the doctor in my country said, i should be searching for the reason, otherwise if we continue just treat the symptoms again and again the same way, the iris may stay opened for good one day.
the previous doctor also said they will examine me.
but this one said, it is not usual to do it.

who was right?

i have contacted the specialist in london by e-mail three days ago, but did not get any answer until now.

Mike Bartolatz · Post by **Mike Bartolatz** » Wed Sep 03, 2008 3:48 pm

If it were me, I'd get to the specialist right away. you have a history of uveitis, it might be related to an autoimmune disease process or to a pathogen.
please CALL Mr Ayliffe for an appointment, until then do as the doctor says and slowly taper off of the corticosteroids and dilating drops. make sure you shake the bottle of corticosteroids for at least 3 minutes, then instil the drop. with your head tilted back and your eye closed, press in on the inside corner of your eye to close off the punctum so that the drops don't just go down the drain into your sinuses and throat (that terrible taste you get is from the drops).

Wish you the very best,
Mike

Meduza78 · Post by **Meduza78** » Thu Sep 04, 2008 3:20 am

thanx for your advise.
but do you know how much it can cost to go to the specialist like this one?
i have no idea how it works in england.

Mike Bartolatz · Post by **Mike Bartolatz** » Thu Sep 04, 2008 9:21 am

he is with the NHS so if you are covered, get your GP to refer you. your discussion with the GP should include the fact that you have the third leading cause of blindness in the developed world which includes the UK and the USA. treating just the symptoms of iritis will eventually lead to glaucoma and Cataracts and if this is allowed to return over and over again it will lead to other complications such as cystoid macular Oedema, epiretinal membranes, possible detached retina, possible vascularization of the retina etc.
this has to be treated systemically to stop the recurrent nature of uveitis treated only with corticosteroids. your immune system has to be downregulated with DMARD drugs or other classes of immunosuppressive drugs to accomplish the goal of off all steroids without inflammation for a two year period. Mr Ayliffe is trained in the use of these medicines to accomplish this and eventually getting you to durable remission from uveitis.

I do not know what it would cost out of pocket to see such a specialist in your country without medical insurance for appointments, testing or medications.

Wish you the best,
Mike Bartolatz

Meduza78 · Post by **Meduza78** » Thu Sep 04, 2008 12:36 pm

i am covered, i pay national insurance and i have a gp. but i have not met my gp personally yet because i did not need it. i registered because of contraceptive pills, but straight at the beginning i was told my gp does not deal with contraception (maybe some religion reasons) and i went to family planning clinic instead, where i regularly go.
and i have already made an appointment at that specialist for tomorrow. i have found his reply in my e-mail box this morning with instructions to call the number and make the appointment for friday morning. and i did so. i will not have time to see my gp (i have read your message just now) before that.
but i bring there a medical card of my gp and boxes of those medications with instructions and i hope everything will be fine.

Mike Bartolatz · Post by **Mike Bartolatz** » Thu Sep 04, 2008 3:24 pm

Let us know how everything goes. Mr Ayliffe is an exceptionally well trained Ocular immunologist. make sure you list all symtoms that you might have along with any diagnoses you have had in the past to include childhood illnesses. ask your immediate relatives what they might have had and if they have any rashes or arthritis or GI tract stuff going on which might help in getting a diagnosis of a cause. if you traveled outside your home country to a third world country prior to getting uveitis, mention that as well.
some pathogens, viruses, bacteria etc can cause uveitis which doesn't respond well to corticosteroids. if you have a dog or cat that might have had toxocardia, Catscratch disease or exposure to cattle or LYME disease through tick bite let him know that as well.

Wish you some relief,
Mike

PS: please tell him who sent him too as I have sent several people to him over the past few years, msb

Meduza78 · Post by **Meduza78** » Thu Sep 04, 2008 4:05 pm

thanx for advice again

do not worry, i have saved this page and i will print it for future purposes, as you gave me so many information i am not able to remember. i will rather let the doctor read all through as i have described my new attack here, too. just in case.
i hope i will remember all relevant details from my health history. but i will rather ask my mother for more. my health records from younger age are in slovakia.
the funny thing is that i do not usually get flu. if yes, then it is just like catching cold with pain in nose-throat, sore throat, sneezing, running nose. but no high temperatures through all those years since i was a child... just last summer i have got quite high temperature one evening, from nothing, which went to 39C and seemed to go higher, it just appeared and after i used a medication to cut it down, it disappeared and i had no other problems, just some weakness for the next day. this was so unusual, that i remember it.

Mike Bartolatz · Post by **Mike Bartolatz** » Thu Sep 04, 2008 8:14 pm

Tell Mr Ayliffe this new high fever information too. it might not be the flu but some other virus or pathogen.

Do call your mom and get your childhood medical records and ask if any of them have arthritis or problmes with their bowels etc.

Good luck in figuring this out,
Mike

Meduza78 · Post by **Meduza78** » Sun Sep 07, 2008 3:39 pm

hello again

i have been there, but it did not go as i expected. the doctor was nice, but i do not think he is with nhs though i did not pay anything for his "second opinion". but he made sure that i will not come until i am covered with additional insurance or pay more money for everything that would be necessary. he said the doctor at previous hospital was right, just cut down a frequency of diluting drops, i use them only at the night, not 3 times a day for this first week anymore...
he said i should go to my gp (or at the eye hospital on my next appointment) and ask for test called b27, which has something to do with genetical effect on joints or bones, and i was also given a perscription on maxidex without a date in case it will appear again, so i can get the medication quickly from a pharmacy and treat it by myself as instructed.
and i think that was all. i hope i did not miss anything.

Mike Bartolatz · Post by **Mike Bartolatz** » Sun Sep 07, 2008 4:29 pm

The HLA B27 antigen test is to look for this protein on the outside of your cells. there is allot of information on this topic in our variour information forums. HLA B27 can be related to Uveitis alone or to Uveitis and autoimmune diseases such as forms of arthritis and Gastro intestinal and skin disease. it is mose often linked to Ankylosing Spondylitis, Reactive arthritis/Reiter's syndrome, Psoriatic arthritis, Crohn's disease, ulcerative colitis etc. if only uveitis is related it responds to Non Steroidal Anti Inflammatory drugs such as Celebrex, Dolobid, Naprosyn, Voltaren etc in about 70% of individuals at MERSI, the clinic of Dr Foster in Cambridge, MA.
if NSAIDS don't work, then Methotrexate along with Cyclosporine A, or Cellcept etc can often result in off all steroids without inflammation.

wish you the best,
Mike

Meduza78 · Post by **Meduza78** » Tue Sep 09, 2008 5:43 am

hello mike,
i have just received invoice on Â£80 for that consultation.
i did not know that there will be some payment for just consultation. even the doctor himself did not tell me that at the consultation. it was not mentioned in his e-mail with instructions to contact him. NOWHERE. I have got an NHS number (i showed him my medical card), i pay national insurance (as you mentioned that he IS with NHS)...
what do you think about that?

Mike Bartolatz · Post by **Mike Bartolatz** » Tue Sep 09, 2008 10:03 am

If you can get your GP to send you to the specialist I would think that the NHS would pay for the appointment. I am not in the UK so I can't comment on cost of appointments. call his office and see what you have to do to get your appointment covered by the NHS.

Meduza78 · Post by **Meduza78** » Tue Sep 09, 2008 11:04 am

you know there was no time for seeing my gp beforehand. i have read his message one late morning and following his instructions made the appointment for the next morning then.
but still: i think there should be some information about a price of consultation before it acually happens.
i have sent an e-mail to that hospital and asked, what they think about it, too.
i hope i will get a reply soon...

Mike Bartolatz · Post by **Mike Bartolatz** » Tue Sep 09, 2008 3:56 pm

here in the USA, we have to ask what the charge MIGHT be before an appointment commences. the fee can change depending on many factors to include time taken in excess of a minor appointment. usually the initial appointment costs allot more than a follow up appointment because of this. the costs could exceed 800 dollars US. for an initial appointment for a specialist.
even pediatricians charge exorbitant ammounts of monies for initial appointments. HERE, you can make arrangements to make payments if an insurance company doesn't pay.

I wish that we all had free medical care that had the best doctors around treating us but this isn't a perfect World. MONEY drives everything. if you have money, you can get the best of care, if you don't you have to figure out a way to pay for the 'real experts' out there.

wishing you the very best,
Mike