My Daily Observation – An Update: 2/3/18

It has been quite a while since I have given an update on my life living with MS so I thought I’d share how things are going.  I know for most of your this type of update does impact you, but I do have followers who live with the disease and I want to encourage and support them in any way I can.

Danny's iphone 696

My first day hooked up – 2011

Danny's iphone 698

The infusion happened over 5 days and they leave this in your arm…

Danny's iphone 700

Finally leaving the hospital – 2011

I have an appointment with the neurologist at the end of March to follow-up on a new medication I am beginning in April.  The medication is called Ocrevus and is an infusion I’ll take every six months in the hospital or doctor’s office.  The initial treatment is administered in two sessions, two weeks apart. At each of these sessions, I will receive 300 mg of Ocrevus over an at least 2.5-hour infusion time.

All following infusions are given as a single 600 mg infusion, lasting for at least three hours, every six months. If I have any ongoing infection, the treatment will be delayed until the infection is gone, then the next dose is rescheduled for six months after the last.

This is quite an advancement because the last time I took an infusion it was Solumedrol IV and I had to the infusion at the hospital for 5 straight days every 6 months or so.

As for my symptoms, they are creeping up on me.  Each day I notice something new and it can be a little difficult getting around, but not impossible.  Honestly, I bite the bullet so to speak and put on a good face in public, but most of the time I am experiencing a relatively high level of pain when I walk.  I don’t really say much to anyone except Evelina simply because everybody has problems and I hate making excuses.

Lately I’ve had issues with my right hip and it makes me wonder if the Solumedrol has something to do with the pain.  One of the most frustrating things of dealing with MS is I never know what is medication side effects and what is a MS symptom.

The issues with my hands still exists and like all other pain I am accustomed to hurting so I just keep my mouth shut and keep trudging ahead.

I have noticed lately that I am forgetting things a little more; absent-minded is how I describe the mind issue.   I’m not sure if it is because I’ve been more distracted lately or if it is a cognitive issue related to MS so I’ll keep an eye on it and report to my doctor in March.

Other than that all is well and for the most part I am focused on what I can do instead of what I cannot.  I learned a long time ago that focusing on what MS takes can be depressing and I make certain to keep my mind focused on finding things I can do and then DO those things until I can no longer.  Then I’ll find something new I can do and move forward positively from new adventure to new adventure.

This fight is a marathon not a sprint and I try to approach it as getting better every single day.   Eating better every day.  Walking the dog every day.  Exercising my mind every day.

Always focusing on the positive….the race to the top begins every morning when I wake up.

Danny

 

29 thoughts on “My Daily Observation – An Update: 2/3/18

  1. I hear you about creeping up! For me, the most disabling symptom is fatigue. That makes everything worse. I am on amantadine, but can only take one half a dose. If I take a full dose I am dizzy and woozy. I already have all the other side effects with the half dose. I’ve tried some natural solutions but have yet to find something that helps.

    Liked by 2 people

  2. That’s the attitude! No use depressing yourself with facts! Not funny, but I know what you mean, attitude and how you view things, focusing on the positive makes a big difference. It is a difficult vigil, but worth it.

    Liked by 3 people

  3. Pingback: An Educational Opportunity: A Behind The Scenes Look at MS! | juantetcts

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s