Optic Neuritis - limboland - private UK consultation ??

[kizzydane]

Hi All

I've just had a visit to my optician/ophthalmologist. I first had problems with my eyes in 1998 ish when I had severe pain behind my eyes and one eye went very bloodshot - at the time I was told by my GP it was inflammation and given drops to sooth it.

A few years later I was driving home one afternoon and I suddenly had double vision - not side by side but one thing on top of the other (very strange!) - I rang the optician at the time and she told me that if it persisted to go and see my doctor - it lasted a few days but got better before my appointment with my GP so I cancelled. This has happened a couple of times over the years but I've always ignored it knowing it eventually goes away!

5 years ago I ended up getting taken from work to A&E because I suddenly went blind in both eyes - total white snow effect! - I went numb down one side and had slurred speech. They kept me in A&E for 4 hours until it subsided then sent me home saying it was probably a migraine. I was so ill for 3 weeks after it - total exhaustion and could hardly walk!

2 years ago I got hit in the eyeball with a toggle - not a huge knock but it made me go totally blind in both eyes for a few days - then I remained blind in one eye for several weeks. The consultant that examined me said my optic nerve was very inflamed & swollen & he gave me steroid eye drops and drops to lower the pressure. I was back and forth having treatment for over a year until it settled down.

I have constant flashing lights that seems to fill my vision to the left - sometimes it's seems to be below/underneath.
I no longer drive at night because I can't see properly when car lights are coming towards me - lights really bother me. I'm an artist and I have periods where my palette looks grey - all my colours washed out. I can't see the stars when I look right at them.

I have developed this constant twitching in my eyelid and eyebrow - irritating! Then this sometimes my whole eyelid spasms right down and covers over my whole eye for a minute or two! - embarrassing when you are giving a presentation or talking to someone in the street!!

Back to this morning - I reminded my optician of this history as my pressure behind my eyes is really high yet again and my eyesight has deteriorated quite a lot since i saw him last. He asked about my general health, other symptoms - I told him about the heat intolerance - the stiffness, numbness, pins & needles in my legs - the electric shock sensations and tightness around my middle - the total exhaustion etc etc etc

He seemed very uncomfortable and started talking to me about optic neuritis saying he thinks that I have been having it since 1998 - he started by saying it could be caused by a virus but he didn't think so in my case - poor man was totally skirting round things - so I saved him from his obvious discomfort by saying 'I think I know what you are going to say!' so he asked me what and I said 'MS?' - he was so relieved and agreed and said that that was what he was thinking - he said he's going to write to my GP.

I've already been referred to a neurologist by the spinal surgeon I saw before Christmas. I'm told I'll have at least a 12 week wait to see him then probably a wait for the tests etc

Has anyone gone private at this point? There is an MS Specialist in this area that charges £250 per consultation. Will it make any difference to this awful wait for a diagnoses one way or the other?? I feel so lost - like I'm in Limboland!!

Any advice greatly appreciated !!
Jenny xxxx

[LR1234]

Hi Jenny
I do both nhs and private.
Do u have insurance?
If not i would find an ms specialist who works nhs and private.
Go c him privately and ask him to do a letter to your nhs gp to c him nhs saying its urgent.
Sometimes the consultant can pull some strings to get u in quicker
Don't bother paying for MRI's privately.....they are too expensive.
What part of the uk r u in?? X

[mrbarlow]

Your symptoms sound like MS. I would recommend taking a precautionary line and looking into supplements and diet issues. This site is a good resource.

For starters;

Lots of Vit D (2000iu at least)
Omega 3's - 6-8 grams of fish oil a day
magnesium
anti oxidants
B complex & b12

Hopefully not MS and the above won't break the bank and won't do any harm

[kizzydane]

Hi LR1234 - I'm in West Wales x
Thank you Mr Barlow - am looking into the supplements to start straight away x

[mrbarlow]

Hi LR1234 - I'm in West Wales x
Thank you Mr Barlow - am looking into the supplements to start straight away x

Luckily I knew what I had before diagnosis so I started Vitamin D and fish oils. Since then I have refined supplement and diet regimen. To date I have only suffered a little nerve damage which is limited to transient effects - buzzing in feet and sometimes hands and a little blurriness in the left eye.

I am convinced early action to damp down the immune system and limit scondary damage is the key to getting this awful disease under control.

In Tesco's / H&B etc you can get all the basics - Vit D, omega 3, magnesium, b complex, zinc, a good multivit, evening primrose oil.

Also look at anti oxidants - resveratrol, quercetin, alpha lipoic acid.

I'd also consider getting a UVB lamp as West Wales not exactly sunshine capital of the World! Im in Saudi Arabia and regualrly sunbath on my balcony - Im sure this helps not only with Vit D but various sulphur ccyle reactions that occur.

Diet - oily fish, fish, poultry, loads of brassicas and sulphur rich foods - onions and leeks Probably best to keep wheat and dairy to a minimum.