Vision impaired help when not meeting criteria for registration?

GlasweJen

For reasons unknown to my colleagues and a specialist neuro-opthalmologist I have lost the ability to converge the two images from my eyes into one.

This loss of ability is not constant, it starts as a fairly manageable shadow image behind what I'm looking at then as the day goes on I struggle to keep the images together so that by the end of the day I've got two big blurry images.


I've been referred to see an orthpotic specialist at a different hospital but meanwhile I struggle to read, watch tv or get about outside! I technically meet the criteria for registering as partially sighted - but only after 4pm ish.

I've contacted the sensory impairment team of my local social services but does anyone know if they will actually do anything to help?

Horseunderwater

May I ask if either of your eyelids are a little droopy? Or is it just after doing a full day of stuff that you find it happens. It sounds like you are having double vision problems. Do you have any neck or swallowing issues?
There might be more to this than just the DV.

GlasweJen

I have a right sided ptosis, double vision progresses as the day goes on, problems with chewing steaks and other "tougher" food, I choke on hot drinks and I sometimes can't hold my head up despite my best efforts. It is a case of "the more I try the worse I make it".

I'm signed off sick from work just now, GP has written "suspect Occular myasthenia" on the sick note and I agree (so my colleagues), the problem is the specialist doesn't and thinks the double vision is a result of me learning 3D vision through stereoptic exercises as a child. So even though I'm not amblyopic he thinks my eyes have decided to work independently of each other, he doesn't know why this only happened since April, I'm too old to fix it so it looks like this is here to stay.

Just to make matters even more complicated I'm post transplant, heavily suppressed immune system so even if it is MG it looks like I'd be too difficult to treat.

Horseunderwater

Hi Glaswejen

I think it could well be Myasthenia, but not just the Occular version, because if you are having difficulties swallowing and keeping your neck upright as well as the ptosis and DV, it is more likely to be GMG. That is exactly how I had got by Sept 11. Funny thing is once I saw the opthalmic consultant, he knew more or less straight away what I had. Sent me down to blood test dept and within a week I had 100% confirmation that I was positive for the antibodies. I now have a neurologist that I see around every 6-12 weeks. I also think that if you are already on heavily prescribed immunosupressants that you may already be half way to getting the right treatment, I assume that they are working OK as you have had a transplant. I am on Cellcept, steroids and mestinon, so they might decide to add in mestinon to see if it helps with DV/Ptosis. It is very hard for some neuro's to agree that you have this illness as they will only believe a blood test and even then not always. I belong to another forum called the Myasthenia Gravis Association which is a charitable website and is full of people who have same symptoms and are having same problems as "us". If you have not already done so, it could be well worth a look. It does seem to strike people without any warning and is rare - there is only around 8000 sufferers of it in the UK. Not all GP's know about it, mine did not, so I have had to learn along with her.
Oh and if you do not already get free prescriptions - this does qualify you for them. I hope that you can get to the bottom of it all.