G'day everyone and thank you one and allfor the wonderful comments and also emails that I have recieved.
Its so very very much appreciated.
I've had two treatments of the IV/IG transfusions now and booked into hospital tomorrow as a day patient to have the third. My neurologist thinks that because I have responded to the treatments so well, its likely that it will be a monthly thing forever. At $8000.00 per bottle of the antibodies I am glad I'm not paying for it but feel blessed to be receiving it.
I am feeling heaps better, my eyesight is about 95% normal now and have stopped having to wear a patch alternating between each eye every hour. I still haven't driven, but hope to after this third treatment.
I was pretty worried there for awhile I can tell you all that, when the doc said that it can't be cured but it can be 'managed' and that I would have to have patience as it can take a year or more to find the right thing to manage it, I thought I was really screwed as it was so debilitating. Thankfully in this small country hospital an hours drive North of me a brilliant lady neurologist has only just started to come down from Sydney two days a week and I was one of her first patients. She is one of the most caring Doctors I have ever had the pleasure of meeting. She said the condition is so rare that most GP's would start and end their career without ever seeing a case......I wish my lotto tickets were so 'lucky'.
Once again....thank you one and all from the bottom of my heart for your caring concerns.
Good to hear from you Jim. That's a tough road to travel but you sound optimistic and I sure wish you well!
Glad to hear the treatments are going well and there's light at the end of the tunnel.
Hi Jim,
I check in to the forum every once in a while to read some of the new posts. I guess I missed this one.
Anyway I'm very glad to hear that the treatments are working so well.
Wishing you the best
Bill
Hi Jim, Sure is nice to read your post. You are truly blessed!
You have all our support in your continued recovery.
Gil
Hope everything keeps going well Jim
Very encouraging Jim , sounds like a better than expected outcome , & earlier than you were thinking. I hope (& pray) that it just keeps getting better for you and Jen.
Excellent News Jim.
You have many people cheering for you.
Keep your spirits high.