optic neuritis??

hi again all- I’ve had symptoms on and off for around 3 yrs, nothing showing on mri or lp.Last tests done around 2 yrs ago though so thinking somethingmay have changed. Since then things getting much worse and tingling spreading to face and tongue. Also been referred to hospital from optom who thinks i have optic neuritis.Anyone know what the hospital will do about his - if anything?

I dont have a neuro apt till end of oct- after chasing it finally last week and being told they had forgotten about me!Maybe I nned to shout a little more, I’ve been back and for to gps for last 18mth but assumed this waiting was normal.

Really getting down with it all now and want to get something clear. Finding it really hard to work , feel exhausted most of time, especially worse when I feel hot;which is a lot of the time.Finding myself really moody with kids and husband.Driving is hard as cannot grip wheel properly .

Anyway- sorry for moan!!

Sorry to hear about your problems, It sucks, we are all always in Limbo land, and yes the heat is effecting me and other so I have seen too.

Other than trying to keep call and avoid driving, I get the wife to drive if my legs dont feel up to it. and today is the first day I have felt really down since being relased form hospital, it comes and goes or stays and drives me crazy.

Try to keep possitive you have you appointment now, call everyday for cancellations, its what I did, they did call me with a cancellation but at that point I had already been admitted to hospital, (no they know I wasnt pretending :wink:

Hi Beth,

Call in ‘Access to Work’ they will advise your work what you need loads of help available like taxis to and from work; you only pay equivalent bus fare; furniture; infrastructure; helper worker all designed to help you not get too tired.

You must learn to tell them what you want; how they get there is their problem but you want it explained. The NHS is the best but you want explanations every step.

I’ll say this as your undiagnosed and there is a time limit laid down by some insurance companies. Do you have a mortgage? If so check your insurance and see if it covers ‘critical illness.’ If and when your diagnosed MS is a CI; claim and you probably will get a cheque to pay off your mortgage.


thanks for the advice, didn’t think to call for cancellations- will do that tomorrow.

Just left feeling really frustrated at the moment, and hate having no answers.

Any other advise will be greatly appreciated.

Hi Beth,

Unfortunately their is nothing much any of us can do until we have our appointments it is a frustrating time, You could always find the post a limbo crimbo on page 1 and vent your frustation in song, you will see what I mean.

We are all hear for you :slight_smile: