Tuesday, July 16, 2013

Update 7/16

About three weeks ago I took a ride with the girlfriend to our old town to catch up with a friend and pick up some cannabis.
It's supposed to only be a 2 hour ride but an accident on the highway had us stopped at one point for 3 hours. People were out of their vehicles walking around and having conversations. Took five hours total just to make it there. Only took the normal two hours back...
I was on-call that weekend and it started in the evening so I had little time to visit.
Going back in a couple weeks, hopefully with no bullshit.

Not sure if it was the heat or the stress, but the ordeal put me in a pseudo-exacerbation. Left leg has gone from spotty numbness to being completely numb and back is hit with spasticity locking it up.
I am also having pains in my right leg now that I can only describe as neuropathic pain. It hits around the shin and knee, spreading out from there.
My ability to walk has gotten even worse. I can only walk a little bit at a time before legs are too tired to continue. Getting a walker this week... wheelchair seems inevitable since I can barely stand with assistance. I am just too stubborn.

Last week my neurologist spoke at a MS dinner and I got to see him afterwards. He thinks it could be a full blown exacerbation. He was due in his office a couple days later. I spoke with his nurse about it the next day. Have not receive a follow up call yet.

When I called the specialty pharmacy to get my second month of Tecfidera shipped, they informed me that insurance had denied the full prescription.
My insurance wants to me to have tried Avonex, Capaxone, and Rebif first. I have already been on Rebif and I wont go on injectables again. We started the appeals process. My doctor was going to send a letter of medical necessity stating that I have the needle phobia and require oral medication.

I was told on Friday that my last great-grandmother who lives a few states away was going to be in a state near by for a week. She was diagnosed with cancer and was given a couple months to live. She is 96 years old.
I was on call over the weekend but on Sunday I woke at 5am and my eyes wouldn't close. I got up, took a shower and hit the road. I was not able to travel there any other time in the upcoming week.
Drove for four hours, got to visit for four hours and back on the road again another four hours back home just before sundown (blurriness in eye makes it harder to drive at night).
My left leg had gotten so numb that I kept double checking its position to make sure foot wouldn't get in the way.
I couldn't get home soon enough.... but I am glad I made the trip. Got to see a newborn cousin while I was there.
Saw the oldest and the newest members of the family... no doubt in my mind that I have taken family for granted. I felt like I had missed a lot while visiting.


  1. Real Glad you got to see the family.

    I have typed and retyped something to say but nothing seems right. Nothing I or anyone can say can make things any better or different. They are all just words.

    You know what I think and how I feel .....so with that ,xoxoxo.

  2. I am sorry about your great-grandmoteher, but glad you got to meet your family.

    I hope you get the medication you want! And hope your leg gets better!!

    All the best

  3. Have you considered trying a paleo diet? It has helped many people feel better. I am going to try :)
    Wish you the best

    1. My current diet is not too far off, but its tough to acquire and afford the quality of food in a paleo diet (while living in a city).

      I am getting closer to a gluten free diet and will go from there. Thankfully they have developed some pretty good GF options.
      Not sure I will ever give up the meat. I certainly try to watch the quality of meat now though.

  4. Yes, I know. It`s hard and expensive to get good quality food. But still giving up gluten should be a very good start, I think. And good meat is good for you - according to the paleo diet.

    Thinking of you!!
    Best wishes always!