Chasing my tail..referals etc..arrgghh!! Glaucoma.. etc

Hi all..hope evryone is ok..

What a week I have had..sorry but really am miffed..

Referals from my gp going awol..been chasing all week..

Physio referal for left shoulder/arm..wasnt received.(posted).so got gps to fax. 4wks now and I realy need to get it looked at..very painful..argggh!

Referal from gps to neuro..wasnt received...and looks like this neuro only does epilepsy on NHS so his secretary doesnt think he will see me..and cant afford private..she has advised a neurosurgeon..who is very good but not sure I need one of

Saw Gluacoma eye dr yesterday..pressure in left eye was 28! so def have to start the drops now in both eyes..he has queeried Uveitis as opposed to On..and it looks like my field vision tests there back in nov were not normal at all and I was told they were..what is going on i ask myself!! he has agreed to send copies of all tests and notes to eye they have and idea of what was going on with my eyes before the other probs started in jan. He remarked the light sensitivity is bad in both eyes..and someting is causing this..and have had this since mid Feb!!


pretty bemused by all of

em x

Good old NHS letdowncrying3confused


Why would a secretary recommend a neurosurgeon?! Very confused about that one! Is she a medic moonlighting as a secretary? Did she go over your history and symptoms? Weeeeeeeeeird!


If I were you, I think I would dump the whole thing in PALS' lap. It's completely ridiculous that this is happening - someone official should sort it out for you. Pronto!


Karen x

Hi Karen..thanks for your input I quite agree!! Its a disgrace and I shouldnt be having to sort all this on my own.its madness..right heading to PALS..

Yes I spoke to neuro secretary about my history and why I want a thorough review re new symptoms etc..and she agreed on that..but I agree shes no expert but she does know the team very well..that aside though I dont think  a neurosurgeon is the right one for me either..

*takes a deep breath..round

Em x


Hi Em

this all sounds a bit absurd.

In terms of your eyes  28 does sound high pressure so it's good they've got you on drops. The Uvietis could explain light sensitivity - have they put you on anything for this or are they still umming and ahhing (it's completely different to ON). It sounds like they still haven't made a definitive diagnosis.

I agree with Karen re your appointments - secretary shouldn't be making the decision no matter how well she knows the team.

Hope you have some luck with PALS.



Don't start me off Em!!!!!! lol xxx I'm only just calming down after my performance/fiasco yesterday!!!

A neurosurgeon?? What an utter utter shambles for you!!!

I spent almost an hour with my GP earlier - he's great - very interested and wants to get to the bottom of it - but then goes on to tell me he's leaving next month!

He again refused to give me any medication for the spasms, fatigue etc. He said the one's he thinks I should be having are ones he can't prescribe without the neuro instructing him  - ie modafanil and baclofen. He wants me to hang on in there until I've seen the neuro. 

How the hell are we supposed to fight these things and take control if they won't give you anything to help with it?? What's the point in me seeing the blimmin GP every week?? 

I'm glad you are getting your eyes sorted at least! My pressures were 27 & 30 and I'm not seeing an opthalmologist until April 30th!! 

Flippin NHS = No Hope Saloon!! !!! xxxxxxxjenxxxxxx



Thanks..very odd i know..

Well the On started mid jan and the light sensitivity has only been a few i think there are two diff things going on with my eyes..but affecting both..equally the uveitis, could be raising pressures in eyes but then again pressures have been increasing for last 3 yrs..its only now they wanted to intermittent dry eyes..a new thing too..think the eye neuros are just not sure..apart from saying the white matter blobs from mri brain scan(without contrast) are age time of scan no evidence of demylation on optic nerve..(scan was done two wks after onset of On and there was visable inflamation on eye exam at first visit. Think they are a bit say the heyho lol Treatment wise not been given anything..the eye drops for glaucoma only..and yet uveitis is a serious condition..and depending where it is..(back front or inside eye or all three) is my sight we are talking about



Have been onto pals and they are sorting at least have them on board..will have to rethink the neuro referal..which of course means..more waiting..etc let a msg to my gp to that affect. Anyway back at eye neuros 27th april and glaucoma clinic 2 mths..


hey sorry to hear of your hassles..hope you can get a new replacement gp soon who is a good as present one..they could prescribe you a short course of try..without neuros say so..worth asking..its just wont be ongoing which is pants I know..x


Please make a trip to eye casualty. You need to be seen soon - it could be an incorrect reading if your opticians done it but best to be safe than sorry.X

Hi Reemz x

It's all a bit complicated!!!

The pressures have been up that high for at least the last 3 months - during which time the optician has been constantly monitoring it - every appointment however has shown the pressure to be up that high. I see this particular optician as he is specially trained to do the free annual glaucoma screening - I get this because both my mum and her sister have severe closed andge glaucoma. On the last appointment he said I have Glaucoma & referred me to the opthalmologist for the treatment I need. 

It's been further complicated after I had an accident with a toggle in my eye 2 years (ish) ago and was blind in that eye for the 9 months following. I was under the hospital eye doc as I had continued severely inflamed optic nerve and high ocular pressure for the whole time - they treated the inflammation with steroids and drops for the pressure.

It's my optician who asked me about my general health and got the long list of wierd symptoms - I never once thought to tell the hospital eye doc about this - as far as he & I were concerned it was the knock in my eye that was causing the problem!

It's the optician who has queried the assumption that my optic nerve problems even then were actually due to the knock - he thinks looking at my previous notes  over the last 6 years - that I have actually been having ON. I have over the years been to my GP for episodes of double vision, blurred vision and pain behind my eye - course the GP has always diagnosed inflammation and sent me away without investigating further. I always accepted it would go away after a few weeks!!

My optician was concerned as my optic nerve is abnormal and I have peripheral vision loss and nystagmus that he is pretty sure is not due to the glaucoma. He thinks things have got confused because there is more than one thing going on!!

I'm just fed up that even for this I'm waiting the obligatory 12 weeks to see the consultant! 

Why can't things just be simple?? !!! XXX jen xxx



Ahhh this seems to be even more of a train reck! I agree - it shouldn't be so difficult!

Glaucoma wouldn't cause nystagmus but can cause peripheral vision loss there is no inflammation to see infact the opposite almost as it damages/wears away the retinal nerve fibre layer. ON is inflammatory so you get a swollen optic disc/ reduced VA, reduced colour in the affected eye/ enlarged blind spot of visual fields etc

I wouldn't necessarily expect a swollen optic nerve from trauma but it can cause the pressures to increase.

It's a good thing your optician has queried things and you're getting seen - albeit a bit late. Though I wonder what was put on the referral - sometimes if the GP/optician hasn't expressed clearly what the concern is you'll be prioritised incorrectly i.e optic neuritis would be urgent. Longstnding optic nerve problem would be routine - very subtle but it does make the difference silly though it sounds.

Hopefully you get some answers to the eye problems you have. It sounds like there maybe more than one or two issues that are giving you problems.



Hi reemz..I think you are right regarding Kizzys probe re eyes..I have had all the symptoms as you describe of ON..and I think the eye trauma she had complicates things but then again the history suggests on i the past also..hey ho..eyes

I spoke to my gp this eve who kindly called me and I filled her in on the missing referals etc..she was as perplexed as me..she has another nuro in mind whom she knows but his list is longer..but as long as he is able to review/examine me etc..than am happy with that..seeing as its been over 18yrs since I have been seen by any neuros..and thats despite being a wheelchair user and having long term probs..some of which are neuro/CNS etc..

em x

Hi Scoobie,

I first started with Iritis which is affected by the light. I was given drops. At varies stages I had three injections straight into my eyes. Not very nice at all.

Then it went onto Uveitis more drops.

Then discovered I had cataracts (this is in both eyes, all of it ), had the op' and it was much better.

Then I had glaucoma, normal pressure is 15, anyting over that is not good.

Suffered loads of pain, went to Moorfields and the pressure in one eye was 48, I was in straight away for an op.

Next time at Moorfields for check up the other eye pressure was to high and once again I was in for another op.

I now have ON.

The op's did the trick and I use celluvisc for my dry eyes and lacri-lube at night.

My eyes still blurr a lot but can see loads better than I did.

Touch wood no more trouble.

So I wish you the very best of luck as I know how awful it is.

Janet x

Hi Janet..thanks for your post..gosh you have had the lots re eyes!!  I just feel that they are  dithering about..trying to put the pieces of the puzzle together re the meantime I am trying to deal with it all..have an appt 27th april back with eye neuros..will have full squint asses/opthalmic tests.. finally got physio referal through for my arm/ will get a date next week and gp is being very supportive on all levels.. I had episcleritis back in 2008 and it was then that my pressures started to go up..I am finding the galucoma drops sting for 10 mins and not sure they are helping the dry eyes next morning..will ask gp for gel tears also as the celusivic drops dont seem to stay on my eyes for long..

Ouch re your eyes and the treatment..sounds like you had it bad hun..glad your vision is better..mine is blurred allot and the oscillopsis is very much there in both eyes still..even when I am laying down and eyes are The fact is I am not having any treatment at present..which is infuriating..and perhpas they dont want one treatment to affect or make the eye probs worse as I dont have just one thing

hope you are having a good weekend..

gt my little mazda mx-5 (m reg) motd last month in the hope I would be driving again.poor thing is sitting on the drive..but hope o be back behind the wheel in the near future..see what they eye drs say..

em x

Hello scoobie

two words PALS i am also going through this and my notes for test results over 12yrs are there but the results are missing i have now made a offical complaint of clinical malpractice and i failure to diagnose and keep my notes safe. My neuro still cant decide despite being confirmed by four neuros as having ms one of which does research for ms. I am having major health issues with my vision and without these results they are blind so to speak or will be soon. I wish you all the best nothing surprises me anymore with the NHS they have there own rules.


Hi Scoobie,

Just a thought re:- eyes, can you ask for a referral to Moorfields eye hospital in London, they run their own transport system and whenever I go for check ups I'm always picked up from home and returned to home. After speaking to many drivers I know for a fact that they travel all over the country, but you will need your gp's ok. They are brilliant and Moorfields is the very best in the country. Worth a try. They'll soon get to the route of your eye problems.

Good luck.

Janet x