Hi pop…blimey! You`ve tagged on to a very old post…where I asked about eye problems in MS…in 2012!
Maybe not much has seemed to have happened in MS research…But it has. Plus it does take eons for research to get anywhere and even when it does, the NICE rules are really strict. So if it does allow a trial or widespread prescrrbing, that takes ages too!
But like you, a lot has happened to me since 2012.
I`ve been wrongly diagnosed and thrown in and out of limbo.
Last December, I went into The Walton Centre in Liverpool for more tests, as my diiagnosis was elusive.
A wonderful neurologist tested me for rare conditions…many of them…and came up with a 70% sure diagnosis…rare spinal PPMS!!!
I go see him for a follow up this Tuesday. It is looking like his diagnosis is right…after 22 years of searching!
BTW…I`m glad you like eggs…I do too!
Boudsx
A lot of people are benefitting from breakthroughs…not your`s truly though!
I am sure that a number of people will be waiting to see what your neurologist has to say at your follow up.
I shall be!
Hi all,
I went to boots opticians to get eye checked out as thought it would be quicker than waiting for my doctors to react. That worked as she sent me straight to Southend Hospital Optician who contacted a neurologist by phone, he prescribed me 3 days worth of methal pregnisolone 50mg a day for three days. That seemed to work as my eye was improving until I came to the end of the course on a Saturday I managed to get through to my GP on the Monday and asked her to extend the treatment as it was working. She told me that was maximum dose and that she had refferd my to a neurologist and to expect an appointment shortly. I received an appointment to see an optical doctor three days latter at Orsett Hospital three days later again. I had eyes tested I was semi colour blind in my left eye and it had 8 /18 vision my right eye was 18/18 and colour vision was fine. He told me I should have seen neurologist straight away. I recieved a phone call from Basildon neurogy department the next morning booking me in for three weeks time I went a bit mad on phone told them i was going blind had no balance slurred speech confusion and memory loss. She then told me my Gp had not marked it as urgent so could not get it any earlier as was on the tudor system. I eventually managed to convince her that it was an urgent case and got time cut to three days. I then got a phone call from my doctor about 3 hours latter telling me how she had managed to get me an urgent appointment with the neurologist it was the one I had made three hours earlier on the phone.
I went to neurologist and was told to go straight to hospital that day and that I would be kept in for three days to have an infusion of methal pregnisolone 1g a day for 3 days. The neurologist booked me in to see her again in three months time and told me that she had booked me a Cat scan. I had the first dose at the hospital that day and two further doses by nurses from the hospital at home team at my home.My eye gradually got a lot better and I would guess that it is about 16/18 and colour is just off what I can see through the right eye. My balance is still bad if I lean my head forward I feel like I am going to fall forward and the same sideways. I still have tinitus in my ears not a ringing sound more like the sound of water running threw a pipe. My confusion and memory loss seem to have improved a bit deafness is still quite bad. If i do anything physical for about an hour I get very tired very quickly. If I go shopping with the neon lights in supermarket it seems to affect me making me feel off balance a bit sick and confused. I think my left eye is taking longer to focus than my right one and confusing my brain and giving me a head ache.
Sunday I received a call from Basildon Hospital CAT scanning department telling me that they had had a lot of cancellations and I could have a scan that day I had the CAT scan Sunday. I was booked to see my GP again Monday at 4 pm after a two week wait. I got a text Sunday telling me not to attend the surgery as the doctor would telephone me instead. I never received the phone call yesterday so im going down there today if i cant get threw on the phone. Hopefully the CAT scan will get sent somewhere to someone who can understand it and not to my GPs. I will let u know what happens if anything when it does. Hope you are enjoying staying in personally finding it quite nice spending a lot of time with the girls.