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.



It Might Be Time For a MS Check-Up

DannyUnfortunately I need to go see my neurologist.  I have noticed over the last few weeks that my symptoms are flaring up much more than usual.  This usually means a new lesion is causing an exacerbation.  When this occurs my limbs experience more pain than normal, which is incredibly uncomfortable.

Right now I am experiencing lightning flash pains in my legs that take my breathe away at times.  Also, I have been losing feeling in my left hand, which is a brand new symptom for me.  I’ve had hand pain in the past, but I’ve never experienced numbness.  The most annoying symptom is the return of the headaches.  I don’t want to go back on meds, but I also don’t want to burden Evelina with my constant complaining about the pain.

Hopefully the doctor has some great solution.

Danny’s World: My MS Update

Danny's iphone 022It has been a minute since I updated everyone on the MS front so here goes.  I have been off all my medications for about a year.  I will take the occasional pain pill, but I try to limit those because they are dangerous.  I stopped taking my injections of Copaxone in May of 2016 simply because I was worn out from giving myself an injection 3 times per week for nearly 3 years.

Without the medications I simply have to tough it out.  It isn’t easy, but I prefer the pain to all of the side effects of the pills.  I’m not sure which is worse, MS or the medicines used to treatment MS.

My two primary symptoms that I deal with are fatigue and lightning flash pains.  The fatigue I manage as best I can and have learned to rest a lot on the weekends.  There are still times when I am asleep at night before 9.  I joke with Evelina that I’m just getting older and eventually you’ll find me at the cafeteria at 4:45 pm eating dinner.

For my fellow MSers you understand the flash pains.  They are the ultimate in shooting pains in my hips, legs, elbows and hands.  They hurt pretty bad, but it’s nothing I can’t handle.  Like I said, for now I’ll deal with them versus taking carbamazepine.

All-in-all I cannot complain too much.  I am sure there is someone in this world who would gladly switch places with me.  Isn’t life funny like that?  We think we have struggles until we read the story of someone who is fighting an incredible battle.

I hope everyone takes time be thankful for the simple pleasures of being able to walk.  It it so easy to take it for granted.

Have a great Friday and a relaxing weekend!

Danny’s World: MS Can’t Hold Me Down-Obstacles Are Designed To Be Overcome

I know a lot of my readers suffer from chronic pain and I try to be an example of how to fight back.  Today I went for a quick walk.  I didn’t want to and my body yelled at me every step of the way, but I know I have to do it.  I look at exercise like this…if I don’t force my body to move, then MS wins.  I know a lot of you don’t exercise because you have told me so.  You have said it hurts too bad.  You have said you are too tired.  I get it.

I almost had to call Evelina to come and get me, but I didn’t.  I willed myself to finish what I started because in the long run it will benefit me more than sitting around doing nothing.  Do you think I want to?  No, I would rather sit and do nothing.

To those who tell me they cannot I would challenge you to begin thinking about what you can do instead of what you cannot do.  If you can only walk to the end of the driveway then do so.  If you can do arm lifts from your chair, then do so.  If you can swim in the pool, then do so.  Do what you can do, but don’t settle for doing nothing.

And it begins by putting one foot in front of the other.

The Cigarette Lady, Dollar General And A Random Thought

Will you do me a favor and Subscribe to my channel?