Just seen the neurologist today as has seen one previously who said I had neurological signs of developing MS. Today the consultant I saw said that it is unlikely this is the case and he cannot be sure until my RA is under control.
The RA consultant last week had said that he would not put me on medication for the RA until I got the optic neuritis and other symptoms under control and that I had to wait to see the neurologist. Now I am very confused, as you can well imagine.
The neurologist has said that he will write the the RA consultant to ask them to put me on Retuximab as I have tried, sulphasalasine and methotrexate (in both forms) and had bad side effects from both. I was to try Hydroxichloriquine but never started this medication due to having 4 bouts of ON over the last 3 months. Having looked up Retuxibam it says I cannot take this as being sero-negative.
Having now been on no medication for coming up to a year and showing signs of erosion in hands and feet I am getting a little fed up as no one seems to want to take charge of my treatment. I's sure everyone else understands how frustrating it is to be in pain every day, it is now 2.5 years since diagnosis and have not had any success as yet, and I know I am not coping well at the moment due to the damage and partial loss of vision which I have been told by the ophthalmologist is now likely to be permanent. I feel a bit like a mushroom; left in the dark (you know the rest). Have even tried my own Gp who gave me pain killers (which I only take on the really bad days as dont want to become dependant) and they advised that I wait for the consultants to make the decision.
I do ask questions but dont seem to get answers (not ones that tell me what treatment to expect anyway) and sometimes feel that I am a bit of an inconvenience even attending as they always seem to be wanting to rush me out the door as the clinics are always running late.
Sorry for the long rant, but it does help to share even if no one can give advice, just very frustrated right now and the 2 hours sleep a night is not helping.
Hope you are all having a much better day.