Can anyone help with my problem please? See details in add info

[cormorin]

Just how fast does wet amd develop? I have had dry amd for around 5years & had some weird effects blurring vision & lines 'dipping' on tuesday. Saw a doctor on wednesday evening & was told i would be contacted by the Eye clinic 'shortly'. Friday i was told by doctors surgery just to wait for contact by mail.Now back from Specsavers who have said should have been contacted right away & referred again to be contacted in day or two for wet amd appt. Local hospital eye clinic site says vision can be lost in 3 days. Where does this leave me please?

[Larch]

You should be seen as soon as possible - within a few days. Do you have an Eye Hospital you can get to. It will have an Accident & Emergency department that will be open 24/7. I was very glad I did that. Wishing you lots of luck. Take care.

[cormorin in reply to Larch]

Thanks for that, have seen my GP who rang the Clinic to be told i would hear from them asap.That was wed pm so saw Specsavers yesterday pm & they have faxed all to the Clinic & now wait again.

[tonys]

you don't say if the wet amd is in one eye or both, if its affecting both eyes (quite severely) then you could present yourself at the A&E during a week day and its likely they will send you to the eye clinic immediately, but if its only in the one eye you may wait two to three weeks before getting an appointment, do not worry to much about this delay as most of the visual effects you are experiencing should clear if your consultant recommends a course of Lucentis. Good Luck

.

[cormorin in reply to tonys]

Thanks for that have had dry amd in both eyes for 5+ years. Noticed changes on tues pm so saw GP Wed pm. He rang the Clinic who should have contacted me asap. Went to Specsavers yesterday pm & told wet in right eye only for now. faxed all to Clinic again so back to waiting.

[Beldie in reply to cormorin]

Tomorrow morning you could try telephoning the helpline of the Macular Society where you will find the very best advice. In my own case I've been informed that treatment should be started within two weeks at the latest, but the Macular Society is your best bet, I think, for information on all topics relating to your problem: they have more knowledge of this condition than even the best of G.Ps. Best wishes from me!

[cormorin]

Thank you i will ring the Macular Society first thing tomorrow & 'pick their brains'.

Hopefully i will hear from the clinic before too long but talking to someone who knows what they are talking about will help stop the panicking till then.

[jayne1234 Macular Society]

Hi Cormorin

If you have not already done so please do call us on the Helpline of the Macular Society. Phone Number is 0300 3030 111. We will be able to advise you. The office is open from 9am to 5pm on weekdays.

[cormorin in reply to jayne1234]

Hi many thanks for that. Have rung & got a lot of helpful advice.

Got in touch with the Opthamology Dept who tried to find my details but somehow 2 referrals, one from my GP & one from Specsavers have gone missing.

Not happy & though a Sister is supposedly being contacted to sort this out this afternoon, i will be ringing again in the morning if i have heard nothing.

If it hadnt been for all the people here who have bothered to try to help me i would have 'gone nuts'.

Thanks for being there

[jayne1234 Macular Society]

losing your notes twice is not good enough. This is your eyes, not their eyes and it is very important that you are seen quickly. Please contact us again in the morning if you have not heard from them. I am glad you will also phone them - never be afraid of being a nuisance!

Helpline

[cormorin]

Thanks for all your help everyone. Finally talked to someone who saw why i was panicking especially after being told yesterday morning that i had an appointment for 1st AUGUST! Must admit i was very wound up at that & insisted that it was sorted. Did say 'please' tho!

Result is an appointment for 29th, next wednesday. I was told that this was good as it was early considering that i had only been to see Specsavers on Saturday. So where my GP's request for me to be seen asap went, who knows?? It is going to be 2 weeks since the first symptoms so just hope that it will not be too late. Clinic insists it is only 1 week. Very very scary as each day it is becoming worse.

Just trying to keep busy & not think of all my books (100's) that i may not be able to read soon.

[Debbiej]

Hi hope you don't mind me asking but how did you get on yesterday at the hospital,I can understand how scared you must of been.i have the dry type in both eyes

[cormorin]

Hello,

Cant decide if i am relieved or disappointed. After my Injection Buddy talking me through it in case i had Lucentis nothing was done.Although i have a lot of visual disturbance & find it hard to read & type etc i do not meet NICE's criteria yet.

I can read too far on the test & the wet is not so big yet. In a month maybe i was told. So still scared but having been told it will not progress at the rate i had been told it would was helpful. Though being told that dry can cause these symptoms was new as i had not been aware that dry can cause these visual disturbances & move that fast. That is a bit worrying now. I guess i just have to wait & see what happens.

One good thing is that the Consultant, Mr Patel, is trying to set up a trial for people on my level of amd rather than the trials that usually test on far worse conditions. I am now on his list so even if it doesnt work for me it , hopefully, will work for others so well worth being involved. A big Thanks to Mr. Patel who was very, very patient with me yesterday.

Thank you for asking as it really helps that there is someone out there that cares as we are 'in the same boat'!

[Debbiej]

It's not easy is it .as least it sounds like you have a caring consultantant.i am lucky to my consultant is lovely. It is difficult if you can get the same symptoms for wet and dry because if it is the wet we know it needs to be treated ASAP whereas the dry can e left..do you mind me asking how old you are. I was diagnoised with ARMD 9 years ago when I was only 38 in both eyes

[cormorin]

That is so young to have amd isnt it?

I am 68 & have had dry amd for 5+ years in both eyes.

Think i got scared by some of the scare stories you find online.

Little bit calmer today tho & off in a minute to some friends, its evening & nighttime i find hardest as on my own then.