andyturner 12/07/18
Last reply 2 days ago
Flare up

I been having double vision, blurred vision and pain behind left eye. Managed to get a cancelation at opticians. Optical neurtis has popped its head up again. Now have to wait for appointment at the eye pavilion.
This is the sexond time this year.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stumbler
5 days ago

@andyturner , contact your MS Nurse as a matter of urgency to discuss this.

Visual problems of this nature are usually treated with Steroids, to expedite the resolution.


cheegum
5 days ago

Shouldn’t you be going into emerg? Get some pred in your system?


andyturner
5 days ago

Phoned MS nurse on call. Still waiting for call back. Lost count of how many flare ups I’ve had. And have been told by the neuro at the eye pavilion and by consultant, before. They have clinically proven steroids don’t work.


nutshell88
5 days ago

I hope you get well soon
you probably need IV steroids
because optical neve is a main one
dont delay tour meeting better be at anne rowling or dr hunt at western general

I believe dr willer is also an excellent dr in Edinburgh and I bet you know better.

I’ve had this double vesion more than I can remember is the past but it was fading away in couple of weeks most of the time
last time I got it was 2015 or maybe 16


nutshell88
5 days ago

hmm i just read that steroids dont work its probably because you’ve had it many times in the past
in 2014 dr willer daid u cant have steroids anymore and I’ve never had it untill niw glad i didnt need it
ask them about another type of steroids I remember the first type if steroids i used to have was called solu medrol


nutshell88
5 days ago

try not to move your eyeball far left right up down and rest your eye for now


stumbler
5 days ago

@andyturner , Steroids do not make a difference to the overall outcome of a relapse, but they do make that outcome happen quicker.


andyturner
5 days ago

I not going to take steroids. I just going to ride the wave. I’m on gabapentin, which helps a bit.


nutshell88
5 days ago

your symptom needs steroids
altho I agree with what stumbler said
steroids is risky indeed to the bones and its not good to deprnd on it bur your symptom is kinda serious
after all your neuro will decide whats best


andyturner
4 days ago

Last time neuro said steroids don’t work on optical neurtis.


nutshell88
4 days ago

still you better go to your neuro
they’d have an alternative sulotion
delaying optic nerve treatment is not safe
if your nurse havent called back call emergency and go there im sure they’d be able to contact your neuro or an ms nuse


andyturner
4 days ago

I will.


stumbler
4 days ago

@andyturner , I’d be concerned if your Neuro suggested that steroids don’t work on Optic Neuritis.

The following link is part of the NICE guidance for managing MS:-

https://www.nice.org.uk/guidance/CG186/chapter/1-Recommendations#relapse-and-exacerbation

Point 1.7.7 to 1.7.14 covers the use of steroids. Now, a relapse is an inflammation on the Central Nervous System (CNS). Steroids initially address that inflammation, then assist in the recovery.

I don’t think the steroids are intelligent enough to differentiate the optic nerve from the rest of the CNS………….


andyturner
4 days ago

I’m going to the western general hospital. Pain is getting to sharp.


nutshell88
4 days ago

good 👍🏻 before weekend


lightning87
4 days ago

Hope you are okay Andy let us know how you get on when you are feeling better x


andyturner
4 days ago

State of play at the moment.
– Went to Western General
_ Got sent away to get a referral off my GP
– Dropped my e cigarette and broke it.
– Totally stressed out.
– Went into my GP without an appointment. Explained situation to receptionist.
– Met with GP. She phoned around trying to get hold of a neurologist.
– Half an hour later given a 5 day prescription for steroids.
– Went to chemist. Not in stock.
– They phone all the Boots in the surrounding area.
– They don’t have them.
– Have to wait till 1pm tomorrow. Until I get them.
What a day. In bed now, knackered. With sore eyes blurred vision. And a new e cigarette.
Happy Friday the 13th to me. NOT


nutshell88
4 days ago

I remember they are trying to be more organised by asking you to go to go
MS patients are tired by nature

oh well I remember I used to go to a real good pharmacy but I forgot what its called
maybe on lothian Rd not sure tho but its not so far from Wharton Square , meadows and art college


stumbler
4 days ago

@andyturner , that’s a day and a half. You seem to have been let down by too many NHS personnel, both at the Hospital, GPs and you MS Support team.

I’m not surprised the High Street chemists haven’t got the Steroids in stock. It’s an exceptionally high dosage. The Hospital pharmacy is usually the best bet, but they probably wouldn’t accept a GP’s script.

You could try enlisting the assistance of the Patients Advice and Liaison Service (PALS) at your hospital, as you do seem to have been let down.


nutshell88
4 days ago

they were sending me steroids tablets by post
I used to get treated at anne rowling by dr Willer
my gp was gordon scott
pharmacy was called Gilmore medical
but never taken steroids of them they send it by post and yep medical care was stressful

https://maps.google.com/maps?safe=strict&client=safari&hl=ar-sa&um=1&ie=UTF-8&fb=1&gl=sa&entry=s&sa=X&ftid=0x4887c7a1fc20eb75:0x70103363fc6a44c&gmm=CgIgAQ%3D%3D


grandma
4 days ago

Do you think it’s significant that my nearly exs (just waiting for the paperwork) birthday was yesterday! The old jokes about Friday 13th are codswallop but it doesn’t stop us feeling awful when you have a day like that, today (it’s after midnight so Friday is finished) and tomorrow will be better, promise🙏🏻


andyturner
3 days ago

Thank you everyone for the support. I get my steroids today.


lightning87
3 days ago

Glad you got your steroids in the end and hopefully they will start to make you feel better quickly.

Sounds like you had a very stressful day. My mirror broke in my bathroom yesterday, looks like I’m doomed for the next 7 years at least 😂

Hope you’re okay today x


nutshell88
3 days ago

you’re welcome
drs were giving me IV steroids for anything regarding to eyes but I remembers drs in Edinburgh were giving me 500mltablets

I advise you in the future if you got simple relaps to take steroids for it
save it for moments like this


andyturner
3 days ago

500mg morning 500mg afternoon.


andyturner
3 days ago

First 500mg of medrone just taken.


nutshell88
3 days ago

good
if cortisone is still effectivevwith you hopefully you’ll notice an improvement quiet soon.


nutshell88
3 days ago

and pardon
i meant i advice you if you got simple relapse wait for it two weeks no steroids
but if hasnt improved then take the steroid

because if you are taking it forvanything then it wouldnt be effictive much and it would harm

keep it for serious relapses like eyes


andyturner
3 days ago

Have had the symptoms for two/three weeks. So I think it’s time.


grandma
2 days ago

Hi Andy, watching the final this afternoon? Ideal time to lie on the sofa for a couple of hours. Beer might be involved. Have a nice time😍


andyturner
2 days ago

I would love too. But don’t drink. And you know this is the first world cup I have only watched one game.
Just going to chill and think about new designs for my Silverwork.


andyturner
2 days ago

Anyway taking 1000mg of steroids a day and all the other meds I’m on, think it would be a suicide mission. Eyesight is still blurry,


stumbler
2 days ago

@andyturner , Steroids aren’t an instant fix. Your problems are caused by an inflammation on the optic nerve. The Steroids will primarily address the inflammation and then will work with your body to help you recover.

The Steroids will be helping this recovery over the following 6-8 weeks. But, you have to allow your body to recover, by resting and relaxing.


pigecan
2 days ago

Hi @andyturner, just sending you some good wishes and hopes for a pain free day. As people post their troubles and solutions, we all learn something.


nutshell88
2 days ago

I’m not sure if the amount of steroids is high or normal
but usually with thus symptom they give itvas IV
at least that was in my case
maybe the 1000mgva day is equal to the IV
optic nerve is not simple
im not sure about your other meds
but if they are behind counter meds you may delay them

with steroids you better drink so so much water
it gonna be better but by bit hopefully its not as quick as paracetmol
I remember they asked me to add cloth full of ice on where i feel psin on my eye while its closed to ease the infection not sure about your case

hope you recover quiet soon


nutshell88
2 days ago

or you mension the meds you’re eye to your MS nurse
we cant manipulate with steroids dose time or stop it suddenly


nutshell88
2 days ago

sorry my reply was funny lol watching netflix while replying that
mension the meds you’re on to your MS nurse

Post Comment

You must be logged in to reply to this topic.