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

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.




39 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.

  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.

    1. It takes a tremendous effort to remain positive, but in the end it is better than being negative. Plus, people don’t generally like being around someone who is Debbie Downer. lol

  3. I hope the new infusions will do more good than harm. Having to figure out if your symptoms are caused by the illness or by the drug that is supposed to treat it is so annoying.

  4. Very interesting and inspiring post. You are brave!
    The mind has awesome limitless powers, I am sure you will make it, just focus on getting healed!

  5. You have tremendous courage, Danny. I surely relate to tolerating pain, learning to bite the bullet, and keeping the focus on gratitude. Thanks for sharing this. You persevere and give strength to other people chronic illnesses.

  6. Hi Danny. Tried to reblog but it wouldn’t let me. I didn’t know you have MS. I’ve had it since I was 11, but wasn’t DX’d until I was in my 50’s, probably because I live in small town, America where we only have one hospital, big pretensions, very few doctors with not much education and large egos, and no one here ever heard of MS. I had to fall in the street in front of an 18 wheeler truck before my doc even suggested an MRI. You probably already know the labels, “lazy”, hypochondriac,””not much of a woman” (you wouldn’t know about that one}, but I always knew there was something wrong — just couldn’t get anyone to believe me. I’m 75 now and still going sorta strong, but the key word is STILL GOING. Can’t take any of the meds because of the bad reactions, but only now heading into more advanced problems. I’m planning on living another 25 years though, and I’m just stubborn enough to do it, even though I do all my traveling in a power chair now. The thing is, I travel! Keep your chin up! If I can make it this far, you can make it even farther! Angie

    1. Hi Angie! Yes, I was diagnosed in 2007 after feeling numbness in my legs. I am glad that you are still keeping on the move as it is important to continue to do whatever you can. MS tries to take and we must keep it from doing so!

      1. At 75 I’m not sure how much longer I have, but I’m sure not letting it slow me down very much. I started having symptoms when I was 11, but this is a small town — even smaller back then, and nobody knew what those headaches were. I was treated for migraines, actually given morphine at that age! developed an allergy to it, labeled lazy, good for nothing, all the usual stuff because of the fatigue, but I knew I wasn’t lazy. I had to be doing something all the time, even if it was sit-down work like hemming garments and darning socks, but those didn;t count. It took my falling in the middle of the street in front of an 18-wheeler one night to get my doctor”s attention. He had me labeled as hypochondriac! He asked me if I had ever had an MRI, and i just looked him in the eye and said “you’ve been my doctor for 30 years. Have you ever ordered an MRI?” I had it just before Christmas and his nurse called me just before their office closed for the New Year’s break and informed me over the phone that the results were positive for MS. Then asked me who my Neurology Surgeon was. Like everyone has one of those! And then I was told to think about it, and she hung up and closed the office for a 4 day weekend! That’s an example of the care we have here! S’alright though. I found what and who I needed and I’m doing great. I’m Wonder Woman and Super Mom rolled into one!

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