I went totally blind over a period of one night when my wife was finally able to trick me into going to the hospital. Doctors have always scared me so I am stubborn.
It all stared with me feeling sick, like a virus. I have always been strong and worked while sick al the time. I took some antibiotics and it didnt get better and my nose was numb on the right nostril. I went to my doctor who is the greatest and he said it was time I took care of my high blood pressure. He gave me Norvask and in 2 days I had severe double vision. He said there was not any indications of vision problems with Norvask and to cut the dose in half. Well the rest is history.
I went totally blind about 2 weeks later and went to the ER where they could find nothing but skyhigh blood pressure. I went the next morning to a neuro opthamoligst Dr. John McCary In Austin. He is the best. I was run through the testing mill of everything. MRI was clean but optic nerves were highly inflamed. Did the IV steriods and got better.
Did this like 5 times with a dose of IV HGH and it didnt help much. Finally lost all sight in left eye and I have about a 20% fiield in the right side.
Had a bad flare and could not walk Oct. 2008. IV steroids worled and I seem to be left with minimal residual loss of balance so far. New neuro, Dr. Tallman is great and will do the solumedrol 2 or 3 times a year for me which make me less stressed out about having attacks since my vision is so bad. I will say waking up and not being able to walkk scared me worse than the going blind part. Strange how we are all affected differently by this horrible disease.
Had another flare and could hardly walk , 7 rounds of IV steroids did nothing. Tried 2 more days and gave up the treatment. Went in for MRI and it showed thoracic and cervical lesions trans versing 3 vertebrae. I was DXed with NMO. I started plasmapheresis or PLEX . I was in a wheelchair going in for first treatment and walked out on my own! praise God!
I has a perm cath put in my chest that day...April 19 2010 and have had it since then with no infections at all. I had a fistula placed in my upper left arm 8 weeks ago, today is 3/26/2011 and they used it for the first time last Tuesday and all went well. This Tuesday they will use it again and if all goes well I will get the permcath out in another week. I am down to 20mg prednisone a day and am taking cellcept 1000mg BID. the hope is to get off the prednisone completely and get to doing the PLEX once a month. Best part is no CRAB drugs for me!