hear what I mean, not what I say

When you hear those words, what do you think? Well, from someone who is ‘older’ and has MS, what we mean and what we say are two different things. I could chalk this up to just being 55, I’m sure. Anyone born in the 60s or before could relate. When you have MS, forgetting words is a daily occurrence all by itself. Forget about being old. So, hear what I Mean and not what I SAY….

Recently I was driving home, talking on the phone via the link to my car (I am sure there is a name for that, but I can’t remember what it is). I was trying to explain to my husband where I was. I told him I was on highway 9, taking the “100th-street exit.” Now, understand, he drives for a living. He knows cross streets and such in all sorts of places. He very calmly says to me, “Hon, I have no idea where you are.” At this point, I become very frustrated. I reiterate what I said before.

He still has no idea what I’m talking about. Then he says, “do you mean you’re on highway 2?” “YES!!!!!! that’s what I said!” Then he says I had told him highway 9. “Okay! Whatever, 9, 2, same difference. You’re supposed to know what I mean!” Just one example.

Sometimes I just don’t have the words to say. Word finding problems are real. I know that as we age, this can also become an issue, but with MS, the issues are ten-fold. Some of you may remember your mom or grandmother go through a list of your sibling’s or cousin’s names while trying to yell something at you. I do this with everything. Apples, cars, patients at work, colleagues, dogs, vacuum cleaners, cats, sisters and kids. It’s not fun. Anger breaks in every once in awhile when I can’t remember. Then I have to just breathe through it (when I remember to).

I have been on a newer medicine called Ocrevus, for about 2 years. I have not had any relapses to speak of, and this medicine, which I receive in a 6-hour infusion every 6 months, is supposed to not let me get worse. So far, so good. At the end of the 6 months, when it’s time for another infusion, I was told the medicine is no longer working, per se. I do notice I feel better, right after all this. My memory seems better, my walking is better and overall, its okay I think. I would be interested to know if others taking this medicine feel the same or have other experiences.

When my mom was here, before she passed 9 months ago, I would call her before I had the infusion and afterward. She always offered to go with me, but realistically, there is no reason for someone to go and sit there for 6 hours or more, while I receive this medication. Perhaps I just can’t allow someone to give up so much of their time for me. Maybe I just would rather do it alone, proving to myself I can handle this wicked disease.

I don’t know. But she isn’t here and I miss the phone calls desperately, when I could hear her sweet voice. Now, I talk to her anyway; I just can’t hear her on the phone. In my heart I know she’s with me and I feel reassured I’ll be just fine in the end. I can hear what she means. Ironically, she is with me now always when I go to get Ocrevus.

How lucky am I to have had such great love in my life, that it hurts so much to say goodbye.

MS: apprehensions and admissions on Ocrevus

I have had multiple sclerosis for 20 years this November. Honestly, I haven’t written that in a sentence. Ever!

Twenty-five years ago, if someone had told me this disease would occupy my body, I never would have believed them. Okay, maybe for a split nanosecond the thought would have petrified me, but not nearly as much as being told, “you have MS.” I was in denial in the beginning as I started to lose the feeling in my feet and legs. I stretched, flexed, rubbed, tried to exercise until clearly nothing I tried was going to help.

I am fortunate, I have to say, in that I could be much worse than I am. Still, it’s one of those chronic illnesses that is nearly invisible. I may “look” fine, but inside the pain is intense, and something I don’t disclose to just anyone. Anxiety, fatigue, confusion, forgetfulness, numbness and tingling are the tip of the proverbial iceberg. Still waters do run deep.

I’ve been on Copaxone (daily self injections) for roughly 20 years, on and off, and have tried several oral drugs for my relapsing-remitting multiple sclerosis. One side effect of all those injections was a lot of lipoatrophy (loss of fat from injection areas) and I was simply exhausted from daily doses. You might think, “Yeah! I can target the fat in certain areas like my belly.” That’s a good thought, but its not a smooth transition, you end up with a lumpy tummy with hard, injection-site scar tissue along with fat loss.  Believe me when I tell you, it isn’t even parenthetically pretty.

With oral medications, I often forgot to take them, Tecfidera, Ampyra, and others. It was time to switch. I was panic-stricken to try a new drug, there are so many side effects to worry about, and which drug is always the big question. When my neurologist suggested Ocrevus, once-every-6-month infusions, I was afraid but willing to try.

In August 2017, I had my first 4-hour infusion of Ocrevus (ocrelizumab) which was uneventful, (other than the swollen throat and intense itching of the back of my throat, neck and head), and I say that as mirthfully as possible. It was actually a common response I found out later. I was given two Benadryl and a small dose of IV prednisone pre-infusion. At about 1 hour into the infusion, they stopped the Ocrevus because of the itching and swelling, and the symptoms immediately dissipated. The other option would have been IV Benadryl. There is no way I could have driven home after that. Luckily that didn’t happen. After 30 minutes, they restarted the Ocrevus infusion and I had no further adverse reactions or symptoms.

If you have ever had IV methylprednisolone, 1 gram infused over an hour for 3-5 consecutive days, you can relate when I tell you Ocrevus was not nearly as bad. I was a little bit afraid after the throat swelling and itching, but I was determined to make it through the infusion.

After the first infusion, which was a half dose, I had the second half-dose infusion two weeks later. The second infusion was completely straightforward. I did have the Benadryl and IV prednisone as premedication again, but no symptoms other than drowsiness from the Benadryl. I am sure that counteracted the prednisone a bit. De novo, post-prednisone symptoms are beastly!

It’s mid October, I am experiencing some leg pain and what seems to be joint tenderness. Now I concede, I may just be old and having the first signs of arthritis or osteoporosis BUT I hope not. I just tell myself, “….this too shall pass.”

I have to say I have had a number of prednisone infusions over the course of 20 years, and as much as I despise them, they do help. I am optimistic the Ocrevus will completely abolish any chance of relapse of my MS. That is the goal anyway. If you have not heard of Ocrevus, by all means, ask your neurologist, but you can read more about it here.

Genentech, who brought this drug to market, also offers patient assistance, coverage support and other information.

I’m very hopeful this will be the drug that works for me. The joint aches and leg pain may just be temporary but are a possible side effect of Ocrevus. I’m willing to overlook it right now. I want to be strong and exacerbation-free for once in 20 years. MS is one of those diseases you can’t see, but it is with me all the time. I may not tell you if I have pain, numbness, dizziness or fatigue, but it’s always there.