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Daunted again xxxxx

Morning all!

Well the last 2 weeks have been eventful ones – I had another brain MRI and a cervical one thrown in

I had a special scan of my Optic Nerve

I saw the endocrinologist for my test results – everything was normal so things like Cushings etc are ruled out. The Addisons test was inconclusive so I have to go in for a day for more advanced testing – he is also arranging a specialist specific scan of the pituitary gland to see why it’s enlarged.

All moving forward slowy but surely eh! – then yesterday I saw the ophthalmologist for my Optic Nerve scan results – and what another performance it was!!!

I went in and the nurse did all the usual eye tests – I sat down and the doc asked me all the usual questions and then did the usual eye examination with the usual drops

Then she sat back and said

" Hmmmm - There is something showing behind your eyes so I’m sending you for an Optic Nerve Scan”

I said “But I’ve just had one - that’s why I’m here isn’t it?? - for my scan results???”

She looked at me stupid - then looked a bit further through my notes and eventually found everything including the scan results!!!

They had me down as a brand new flippin patient!!!

So she looked at the results and said

“Ok - there is damage showing here - I’m giving you a prescription for drops – you will need to take them for the rest of your life - there will be side effects but if they are intolerable you can phone the nurse”

I asked what they are for and she said

“the Glaucoma! – It’s in both eyes not just the one – you have vision loss – that’s irreversible I’m afraid - but hopefully we can stop any further progression – see you in 3 months”!!!

Well I wasn’t having that! I bombarded her with questions – especially about the other doc querying whether I’d had Optic Neuritis in the past – she said that the damage showing on my optic nerve could have been caused by ON but who knows now and totally dismissed it! Even though I explained that it is important as they are investigating MS - but she wasn’t interested!

The other eye doc had assured me that my vision loss could not be due to the glaucoma as it’s not advanced enough – now she is saying different!!

It’s ALL too flippin flimsy for me to be honest!!! This limboland journey is chaotic and inconsistent to say the least!!! What with letters missing, notes missing, one doc saying one thing then another saying something else – even the same doc saying one thing then when you see them again they say the total opposite!!

Basically I’m left all the time with the nagging doubt that they are missing something by being so disorganised and not looking at notes properly!!!

xxxjenxxx

Hi Jen This limbo land thing is just so tough, isn’t it? It really doesn’t help when the health professionals are so inefficient. It sounds as if you are making some progress though, albeit slow progress. I know you want to scream as the left hand doesn’t seem to know what the right hand is doing. I wish these people would sort themselves out. You will get there Jen. Keep your chin up. Thinking of you, Teresa xx

Hi Jen, Don’t know what to say other than bl@@dy hell! It just is not good enough that there are so many inconsistancys! No one seems to be singing from the same hym sheet! You must feel like you are chaceing your tail. I hope the endocrinologist manages to get somewhere for you, sounds like he is on the case. All the uncertaintany is dreadful for you. I think sometimes the professions forget how it can affect our lives. With a Dx we can a least move forward a bit and have the hope of some treatment. Is there a doctor you can speak to about this? Your Neuro or endcrinologist Maybe even GP. All the best Jen ppx All the best to you Jen Ppx

Oh Jen what a time you are having of it all…aswell as trying to cope with going back to work.

I dont know much about the pituitary gland other than its a complex little blighter,when they find out why its enlarged will that help with dx and is it possible then that they can cure whats causing your symptoms?

Hopefully you can get all of this sorted sooner rather than later,in your case it seems that the more people who are involved the worse things get.

What are the side effects of the drops that you now have to contend with aswell?

Take care of yourself today

Pip

Eww! I don’t know! lolol x I think I’ll just have to wait to see the neuro - I haven’t been given a follow up appointment yet though for the results of last week’s brain & cervical MRI - I hope it won’t be long!

Yes - the pituitary gland is a blighter! But they are saying that while it may be causing some of my symptoms it can’t be causing all of them though - especially the demyelation stuff etc.

I think they are being extra careful because my dad had Addisons & eventually died from a pituitary adenoma that haemorraged.

Eww! It’s all up in the air eh!!! But hopefully eventualy I’ll get there!! xxxxx

All I can say is hang in there chuck…and the up shot for us is you are out+about on here more.

Take care

Pip

Jen you poor thing the limboland thing is bad enough without them messing you about so much. Do you have copies of the reports from the eye docs? Maybe you could show them to your GP or even an optician to decifer. Sending you big hugs Xxx

(((((hugs))))) Jen.

Stupid, inefficient, frustrating, infuriating merry-go-round the NHS can be at times

Karen x

Yeah what she said ^^^^^^ xx

Oh Jen, I’m so sorry that you’re having to go through all of this. Sometimes the docs just look at bits of paper/scans etc & see just the theory of what they’re looking at - they seem to forget that there is a real person suffering a lot of distress because of these things .

I really feel for you - you’ve been through a lot over the last months & the limboland is bad enough without those we depend on mucking things up.

Take care Jen & let us know when those scan results come through.

((((Hugs)))) to you

Bren x

(((((HUGS))))) Feeling for you. x

Hi Jen

What a train reck! I admit there is a lot happening (?optic neuritis / glaucoma and your pituatary can also cause visual field problems).

See how you go but if you’re not satisfied get a second opinion. Did you see the consultant? If not next time say - I want to see the consultant - I’m happy to wait.

Did they tell you what your pressures were?

Glaucoma is not terrible and yes you have to use drops but it’s much more manageable and controllable nowadays. But obviosly they need to have made the right diagnosis.

Ther scan they did sounds like an OCT - it can show up active optic neuritis (as swelling) or glaucomatous changes by wearing away of the retinal nerve fibre layer around the optic disc area. However if you had optic neuritis a long time ago - there won’t be any swelling to see. The only thing that might be noticeable is the optic disc will look paler and your colour vision will be down as well as enlarged blind spot on your fields.

Certainly ask them questions - have they checked your colour vision etc etc.

You really need some clear answers.

Reemz

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I know it’s a flippin mare!! lol

My pressures were 27 & 30 - but they’ve been at this for quite a while.

The optic disc is pale and cupped (?) and there is an are of what I thnk said haemorrage?

When he drew them on the form the right side was nice and round and the left was really mishapen - the scan result sheet was very colourful & pretty!!! But I have no idea what any of it mean’t apart from when she said the scan showed damage she pointed out a circle that should have all been green but had red segments.

I lost my colour vision on several occasions but it’s been normal for a while nowxxxjen xxx

((((( bug hugs))) must be so frustrating…hang in there…glaucoma has to be pretty advanced to cause damage to the optic nerve…and the fact that they didn’t put you on drops at your previous aopt says that they didn’t think it was urgent to do do!! how pathetic…it’s not good enough Hun…something has caused the damage and it may not be the glaucoma…diid you have field vision tests…? we’re they ok? x

oops big hugs. i meant!! xx

Thanks for the hugs! I need as many as I can get today!! xx

I’ve lost a good dollop of peripheral vision and it showed on the scan as damage xxjenxx

anytime…ahh gosh ok…that could be glaucoma related then…I can see why you are confused …I would be Hun…I am on glaucoma drops for. both eyes at night…they stingy bit but it wears off after a few mins. but they will stop any further damage . hope the drs app goes ok re MRI results…try not to panic or read too much into the email…perhaps they are not allowed to disclose on email what’s in the letter? still it’s a worry am sure to be waiting and not knowing…but we are all thinking of you and do hope you get some answers… xx

This has bothered me also. last year I suddenly was told I had to have trabeculectomy operations for glaucoma on both eyes urgently at just a few weeks notice, and given the coincidence of so many other problems arising and still having weird unexplained symptoms with my eyes and the distribution of eye damage detected being described as atypical for glaucoma, I have continued to wonder whether I was misdiagnosed. I have tried to determine whether ON can cause a significant change in intraoccular pressure but havent really had much success.

I know exactly what you are saying!

First they said Glaucoma in one eye and that glaucoma would definitey NOT be the cause of the loss of peripheral vision and ON/demyelation damage was a strong probability.

Then the next eye doc after 10 minutes totally contradicted the first by saying I don’t have glaucoma at all and probaby not had ON/demyelation. He did however send me for the scan.

Then the next one didn’t even know about the scan at first - finds it and diagnoses me with glaucoma in BOTH eyes and says the damage IS due to the glaucoma!!

No wonder we are mistrusting!!! But what can we do???

and do you know what - I trust the first ones much more because they took time to look at my history, took time to listen to me and had me back for re-testing twice in 2 weeks - during which they gave me the most thorough examination I have ever had!!!

So frustrating!! xxxjenxxxx

There’s nothing to say both can’t have happened.

Optic disc haemorraghes can be a sign of glaucoma and your pressures are high and the red area on the scan highlights areas of retinal nerve fibre thinning so it’s not implausible to think it could be glaucoma.

But as I’ve said that’s not to say you haven’t had optic neuritis. A pale optic disc can be caused by advanced glaucoma (so where the vision and peripheral is very bad), optic neuritis but also other things too.

Incidentally I don’t know about any links between the eye pressure and MS but steroids to dampen MS episodes can cause increased eye pressure.

Maybe the question to ask is - you’ve said I have a pale optic disc - as far as I know this is usually the case in more advanced glaucoma - is this the case? Are you certain the damage to the disc has just been caused by the eye pressure then or could I have had Optic neuritis before and now glaucoma?

Hope that helps. Phew - that was really dredging up some old knowledge!

Reemz

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