Monday, March 18, 2013

Update 3/18

I am unable to enjoy the good without an equal share or more of the bad.
I will start with the bad since its a shorter explanation... Last Tuesday my right eye started to bother me. Within a couple days it was clear that my vision was starting to go in my right eye. It started it the top half of my eye. It seemed like a blurry shade was being slowly dropped. Since Tuesday, each day the defined line of where the blurriness started was becoming more apparent and was enveloping my eyesight... By now I have lost nearly all sight in that eye, the blurriness has taken over all but maybe 10% of the lower part of my eye. I expect the rest to be gone in the next couple days.

On top of the blurriness the eye is killing me anytime I look to the left or the right. It is very difficult to move the head left or right, or even walk without the eyes wanting to naturally scan the field of vision.
The pain is in the back of the eyeball and eventually leads to day long headaches starting in the morning.
Last time I dealt with Optic Neuritis, it was the main presenting symptom that lead to MS diagnosis, and was in the form of double vision. I have not determined what was worst yet, first ON was just scary and didn't know what was causing it and this time I knew what was happening, but I am leaning to this time due to the pain.

I got another eye patch yesterday and was not happy about it. It was impossible to not remember how things were last time I had to wear the patch. I was still reeling from the MS diagnosis and diagnosis of a cheating girlfriend. It brought a lot of shitty memories and emotions back.

Ok, so the good.
On Tuesday (same day eye discomfort showed up) I got a call out of no where that evening from my Neurology Clinic's automated services that I had an appointment with my new doctor coming up on Friday.
I called the next day to confirm and it was true. The girl who handles scheduling was excited with me since she knew who I was and had dealt with me multiple times on the phone during the whole mess with getting A appointment, then everything getting switched due to emergency visit and trying to get back with original scheduled doctor/visit...

I just happen to have my MS dinner that Thursday with my new doctor speaking, so I got to meet him on Thursday before my Friday appointment.
I love the guy. He is a very knowledgeable, open-minded, and funny doctor. He had a open ended dinner, no presentation slides, he took our questions for two hours.
He brought up cannabis himself and made a point to mention that he believes in it as a symptom management for spasticity. He mentioned Marinol but he didn't think it's efficacy was as good as the real thing, since I was sitting right next to him I said it wasn't. He smiled and said he wouldn't ask how I knew that...

Got to see him again the next day at our appointment. We went over everything with my history and current issues. He actually listened and asked questions!
We ran through multiple tests and discussed options. Looks like Tysabri will likely be next but he wanted to get blood work completed before making a recommendation.
He prescribed me Zanaflex which worked ok in the past but I would grow a tolerance over a couple weeks time. He also prescribed 50,000 IU of Vitamin D, which is taken once a week. He said while there is no definitive evidence showing Vitamin D benefit, he said there is a undeniable link in the numbers and it wouldn't hurt. At the time my right eye blurriness was there and was defined as almost half the eye gone. The doctor thought that was odd since it is usually from left/right/side-to-side. I will call him today or maybe wait a day or two until blood work returns to report complete loss.

Next I went to get my blood work done again. The last attempt couldn't be completed due to being dehydrated they said. That last attempt left a huge nasty bruise a few inches long and wide on my arm that was still there by this time. I drank a shit ton of water the day before and the day of. I was slamming it.
They still couldn't get fucking blood out. After multiple sticks in both arms they finally hit crimson gold but it flowed very slowly. Eventually got enough for a couple tests including JCV (required for Tysabri).

Doctor suggested I take the LDN since I am sitting on it. He agreed that since it gave me trouble taking it at night with sleeping, to take it in the morning.
I started taking it on Saturday, no changes. It makes me drowsy for most of the day. I feel no pick up 4-5 hours after taking it when it would normally wake me/everyone up.
He started at the meeting and the appointment that he only views it as something that makes people feel good and can lead to increased mobility. He made sure to point out that it is not a cure and not even close to one.

That's where I am now. Half blind but with a doctor.


  1. I love your doctor!:)

    1. Me too, I have no complaints yet. Very nice guy and listens to what you say.
      Take care

  2. well, good to hear some good! Sucks about your eye especially since you stopped roids recently.
    hope it goes away soon!

    1. It does suck. Looking like more steroids coming my way via IV this time...

  3. Note on JCV virus test: regardless of results, nobody has gotten PML in the first year. It may still be worth it to try Tysabri and see if it has a good effect for you. The only caution on this approach is the potential Tysabri rebound when stopped.

    If positive for JCV antibodies, I hope your neuro gives you the odds for PML and lets you decide. Some people will not tolerate a risk of serious infection regardless of the likelihood. Others like me won't tolerate a decrease in quality of life. The choice should be the patients when given the information to make the choice.

    Good luck,

    1. I saw that stat as well. Some new numbers were just released yesterday on this.
      I don't think I will take my chances with it if I am JCV+.
      I know some people are even doing on/off treatments with it.
      I doubt I will risk it, I have more to see and do before taking those kids of risks. If I was in a wheelchair I might have a different view of risks.

      Your writing deserves more attention by the way. I have been reading for a couple months and have enjoyed it. I just haven't commented. I will make sure to do that so you know people are reading.