Wednesday, March 27, 2013

Update 3/27

Tested positive for JCV. I do not plan on taking my chances with PML and go on Tysabri anyways.
Considered canceling MRI this week because it feels like I will be in another stand-still for a while until new wave of drugs come out. I will be going anyways because this is why I moved here. Do it right and get it over with. Document the decline.

I had lost all vision in the right eye. The blurriness was very dark and distance made no difference. Could not see the largest letter put up to the eye. Also had increased mobility issues.
Doctor put me on three days of Solu-Medrol. Located an infusion center in-network and started the steroids.
I couldn't have asked for a nicer staff at the infusion center. I did one day in the clinic and the following were intended to be done at home but there was an issue with a home care nurse in-network, so I went to the clinic without issue.

Solu-Medrol tastes like shit. More like rusty metal than shit but its shitty.
I don't know if it caused a body temperature change but my body was in pain. Legs more than the rest.
Hard to say if the steroids kept me up at night or the leg pain, but very little sleep.

After three days the vision in my right eye has gotten better. The dark contrast is gone, and replaced with a bright contrast that grabs the light and spreads it, almost a milky haze. Still blurry but I will take that over darkness.
I am extremely tired. Slept through most of the weekend and nearly any hour I wasn't working this week so far. I read that it is not uncommon for someone coming off the steroids to feel this tired. Hope it passes soon, work needs to be done.

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.

Saturday, March 9, 2013

Update 3/9

Completed Prednisone tapper last week.
Regained some feeling in my left leg, numbness is spotty, numbness around knee adds to the walking and standing difficulty since the knee will give out on its own. I can now move toes on my left foot.

I picked a day of the week to get my blood work done and decided that was going to be the day regardless of how my body reacted.
Sat down to get blood drawn, I was feeling the anxiety and clammy shit coming on. I toughed it out, though I admit I kept my head turned and conversation moving. I could feel the needle go in a few times with her saying "hmmm" each time. What the fuck. She says I am dehydrated and my veins are 'puffing up'.
I drink several cups of water and update my records with a PA. Tried again and could not draw any fucking blood. I was told to return another day and drink lots of fluids the night before and day of. I was really hoping to get my 'Man Card' back...

Went to another pharma sponsored dinner. This one was at a church, and I already had my reservations about going, went anyways. The reality was as depressing as the idea. Again I was the youngest by 15-20 years. Most were using a wheelchair/walking aid, and everyone was looking rough. I stuck out like a sore thumb because I was new, and young.
When I requested a couple months back to be added on a mailing list for meetings, I was asked my age at that time. At the dinner I had multiple people approaching me saying "You must be x", so it may have been announced someone my age was joining the group, its not like I am a teenager but I might as well be with this group. I was asked the usual, how long ago I was diagnosed, what drugs I take, and if I would be interested in meeting their granddaughters. Also asked what church I attend and that I should visit theirs.

I didn't find anyone in the group that I felt comfortable with or gave me the right vibe where I can ask if they use cannabis. I am not open enough to ask a group or even an individual stranger if they use.
I have two additional dinners coming up (my future dr will be speaking at one).
I hope to run into someone who is younger and doesn't walk on water. To most here I might as well be sucking the devil's dick.
I would really like to find someone soon. Its been a long time now. There is a difference in how I feel with and without.

Cognitive function has been a major issue the past two weeks. At times I sit my desk and I am out of it. Feel like I have lost direction. Multiple days have been wasted in the last couple weeks where I am not getting work done. Sitting in my office staring outside. A few days were worse than others. No work, no pay.
Lately I find myself mentally somewhere else, don't know where.
It creates a constant doubt since I feel like I am precise in my thoughts/actions and now I am convinced I am always forgetting something or about to lose my keys.
If it was depression I imagine I would have seen this before.