Planning The Unpredictable

On May 13, 2008, I noticed that my vision was kind of screwy. I thought it was the glare on my glasses but I couldn’t wipe it away. I went home that night and decided to stay away from the computer to rest my eyes. I woke up the next day and noticed that colors were off. Whites were dirty and everything was very fuzzy. My coworker said that I should call the eye doctor and so 30 minutes later I was at Dr. Lam’s office in Ballard getting my eyes poked. Lucky, there was nothing wrong with my retina or other parts of the eye. She asked me to come back on Thursday, May 15th for a side vision test.

I showed up the next day and Dr. Lam came in to test my pupils. She noticed that the ‘bad’ eye was not dilating as fast as the other eye. I know that they test dilation for head trauma folks so I am guessing this was a bad sign. The vision person took me back for the test and man, it sucked! I had to stare at a little dot and click a button every time I saw a little light. It took about 5 minutes per eye and it was NOT fun! I completely bombed it. I give my self a D for trying though. Anyway, there were a large number of areas which I could not see at all.

Dr. Lam went over the results with me and it was not too encouraging. She said there aren’t any optic nerve problems at my age except for Multiple Sclerosis. I was too shocked to ask any questions other than “Am I going blind?” She promptly said no because I was taking care of myself. (Oh, Joy) She said that it was time to see the Neuro-ophthalmologist, Dr. Eugene May at Swedish. She said I would get a call that day or tomorrow for an urgent appointment. I went to my car and cried. And then cried through out parts of the weekend…

The next day I had an appointment to see Dr. May on Tuesday the 20th of May. They took a picture of my optic nerve which looked normal which is a good sign. He said my vision will return to normal in a few weeks and that it was Optic Neuritis. The rest of the neurology type tests he did were normal so there was nothing too odd. He ordered an MRI with contrast that afternoon and I would see him the next morning for the results.

On Wednesday, May 21st I met with Dr. May again. He said I was at a very high risk for developing Multiple Sclerosis and there were a few spots on my MRI which might indicate previous activity. He said, lets call it Multiple Sclerosis and get you on a treatment plan. At that point, I had done enough research to know that a three day IV steroid treatment of Optic Neuritis might slow the short term progress of the disease so I decided to do that.

Dr. May said long term prognoses is “good” due to my gender, age and how I presented (vision problems instead of walking problems) but that doesn’t help me wonder things like: Will I be able to pee normally? Will I be able to walk without a wheelchair? Will I be able to work? Have kids? Live normal? I hope that starting treatment early will help the long term aspect of this disease. I currently have Relapsing-Remitting MS which means I will have relapses but will regain (all or most) of that function. A good portion of RRMS folks (50% before treatment was available, they don’t currently have long term data) do progress to secondary progressive which is does not have the remit stage which means usually a long term loss of that function.

The treatment for MS all involves injections. Dr. May suggested that I research them and come back with my choice. At this point, I am considering Copaxone due to the lesser side effects than the other medications. The downside is that it’s a daily injection. All the medications cost 2,000 USD a month but my insurance seems to cover it all so it will be a 20 dollar copay for a 90 day supply. That is crazy! Anyway, that appointment isn’t until June 6th.

In the mean time, I opted to get the steroids to help my vision. The home care nurse, Kim came by on Friday the 23rd to give me my IV. I was going to be getting 1000mg of Solu-Medrol (methylprednisolone) for three days. Tom was kind enough to help me everyday. Lucky, it was a three day weekend so we had time to relax but it was very weird having an IV in my hand all weekend. The doctor gave me Ambien to help me sleep which seemed to cause hallucinations where I talked about flying bunnies and how much I loved my cat. Tom took the IV out on Sunday and I thought it was over.

On Tuesday, May 27th I felt like I got hit by a bus! I felt so horrible. I was dead tired but yet hated everything and everyone. I was so weak and everything hurt. If you touched my back, it would hurt for the rest of the day. It was the oddest feeling ever. I went home and got about 10 hours of sleep. I am finally feeling back to normal today. Thankfully. The vision is getting better but still blurry.

Anyway, that is the story to this point. I have considered if I want to tell people but I honestly don’t care. I figure if you don’t like that I have MS well uh yeah, not my problem. If I can educate myself AND others about MS then I am doing the right thing. So here I am, MS Girl… living a normal life.

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