Hello and welcome old friend, new friends, and friends I've yet to meet! I got on her new therapy yesterday, Ocrevus, without any type of side effect or any type of issues. Well other than the IV Benadryl they gave me was too big a dose and I slept the entire morning away while I was getting the medicine. It was getting so hard to wake me up at first, nurses got very concerned but I guess I should have told them I have a very low tolerance for any type of medicine that put you to sleep. I got to the infusion center around 7:15 to find out my appointment was actually 9:30, oops! The nurses at the infusion center were great however and they worked me In by about 8:15. Having said that I did not leave the infusion center until about 2 p.m. . It wasn't really a long day however since I slept at least 90% of the time I was there.
I have no symptoms yet this morning and feel good and I'm going back for my second half dose in two weeks. Hopefully by Christmas I'll start to feel some improvements from the therapy. We will have to wait and see but I'll keep you updated weekly that's how it's going.
For those of you with the concerns of the JC virus and of tumors like erash and Chris and all the others who have talked about it as well my decision came down to a simple decision. I either stop the progression of my disability or I didn't know how I was going to handle life. So I jumped into the Ocrevus full force, even though I was on Tysabri for over 2 1/2 years and my JC positive virus count had risen significantly over two and I was going into a higher risk category than I thought was acceptable for the lack of results I was getting after the first year on Tysabri.
As far as tumors Chris that is something I will just monitor yearly as I have always done. There's no family history on my female family side whatsoever so I am very positive about that. I'm also close to 60 so my hormones have long since stopped shifting wildly which allows the body to do unusual things to itself.
I pray everyone else is doing well. Checking out the chat room a couple times a week and I see so many things I need to get back to you but I was on such a Negative downswing I just didn't have the heart to do so. I hope now that I have started Ocrevus that will be the positive incentive I need to be able to move through my pain and my disabilities and sit down and talk to all the people I miss so much. I see all the new members that have joined in our numbers have grown dramatically again since I've been away. I know I need it as I've dumped a lot on Jess and Tutu and all the other wonderful members that have jumped in to make the new members feel at home. I thank each and everyone of you wholeheartedly and I will do my best to get back to you later in the week and start working on this chat room as I need to do so much because I miss everyone so. I think would help to heal my heart to talk to all the positive people in this chat room and let their positivity and joy spread over top of me. I need to a special remember what I have repeatedly told everyone in the chat room is that together we are stronger! Until we speak again please take care. I look forward to talking to everyone very soon.
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Fancy1959
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Thank-you Jess. I miss everone SO MUCH! And I don't know how I'll ever repay you and erash and Tutu and all the other members who have picked up my slack in the chat room in especially in welcoming new members during my health issues.💕🤗👐👏
Just knowing you're thinking of me and sending hugs and good wishes my way means more than you can ever know. Hope to be active soon if my shoulder will hold up. Since falling last week my shoulder is doing worse than ever. But I guess that's what the microphone is for on our little nipples.
Oh my gosh you see I didn't correct this on purpose because I wanted the chat room to see I said "what the microphone is for on our little notebooks" and it came out "our little nipples." Hahaha! So forgive our bloopers when they come out occasionally even though we proof read our post sometimes we miss stuff!😂😉
Thank you so much erash for being so constant in our chat room. Your quiet strength and wisdom have become a backbone in this chat room along with this other long-term members and our community ambassadors Jess and Tutu. I don't know what the chat room would have done without so many wonderful people being involved at the same time. I guess that's why we're growing so exponentially with over 2,000 members being part of our extended family in just over a year. I'm so proud to be a part of this chat room and hope I will be back soon because I miss you and everyone else. Thank you for the good wishes you send my way and as I told Jess you will never know how much they mean to me.
Tutu I don't know how I'll ever be able to thank you and yes for your long hours of hard work that should have been split three ways instead of two. I hope to be able to be back soon if I can get my shoulder to hold up. The fall I took last week has really messed with it and it doesn't take much to get it very up in arms. Thank you for your continued well wishes. You don't know how much all the support I get from this extended family means to me. I'd be lost without it. I miss you very much. Take care of yourself please. Tell Jes that I wish her the same thing as well!🤗💞🖒
We miss you too, Fancy1959 , and hope and pray for your recovery. Concentrate on that first. We have the BEST forum members here. They keep things going on their own! So rest and heal. And no more falls!!! 💞
Donnie what a remarkable member you have become in our chat room in such a short time. Your support and prayers and well-wishes mean extremely much to me. Thank you and please take care of yourself as well. Hopefully I will be back in the chat room before long if I can get my shoulder to hold up. Hopefully talk to you soon. Thanks again for all you do.😊👏👋
@Fancy1959. Thank you so much. So many are there for me when I need support or just lifted up in prayer. I'm just returning what I've received. Praying the new med works quickly. I truly think my Plegridy is working well after my last couple of MRIs were good. Praying the same success for you. We'll be waiting for your return. God bless you greatly. If you need anything just ask and its done. My god still works miracles.
So glad to read your updates on this new journey of yours, Fancy1959 ! I know it is helping many in our My MSAA Community to hear your thoughts on the many steps with a new treatment.
Thinking nothing but positive thoughts for you from all at MSAA HQ!
Fancy1959 Glad your first infusion went well, and I hope the future ones go as well. I'm sorry to hear about your shoulder pain from the fall you took recently. I hope that you are feeling better soon.
Welcome back Fancy1959 even if it's just for a little while. I will keep you in my prayers for strength, emotionally and physically! We'll be here waiting for your return!
Congratulations on starting Ocrevus, I hope it will be your magic bullet. I started it about 3 months ago and having been encouraged by significant improvements over the past 8 days or so. It's still early so I'm taking things a day at a time, but I have to say that I'm starting to do things that I haven't been able to do in a long time. I am diagnosed with PPMS, but there has always been a little uncertainty as to which form of MS. Keep us posted!
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JC or John Cunningham Virus 
Second Full Ocrevus Infusion
Finally got my groove back!
PPMS & Living my Best Life
