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A year in a life with MS and Ocrevus

Hello all, it's that time again. I would first like to take a moment to welcome all the newcomers to the forum. I have been in a hermit stage for the past few months. Sometimes I just need to withdraw into myself, just how I am. I am easily overwhelmed by this life, with all the pitfalls and struggle of MS. Battling depression and pain is a constant in this life of mine. Earlier this week I passed my 1st year mark with Ocrevus. I had a follow up with my Neuro/specialist on Tuesday. I was actually due for my infusion on the 14th, however we decided to push it back a few weeks. For me, I do pretty well for a couple days following my infusion. Then it all falls apart, I crash for 4 to 6 weeks following. It completely wipes me out with no strength or energy. Yes, even more so than my already small energy levels. This has been a prominent side effect of Ocrevus for me. It's a small price to pay for the benefits I am receiving. I have had, thus far, no new progression or relapse. I have had some reduction in spasticity, gains in strength as well. They are small gains, its slow going with them, however they are still there. That is very uplifting. I have some restored hope for the future, that's priceless! We have pushed my next infusion date back to the begining of June and are also going to push the next infusion to the begining of 2019 as well. I was unable to spend time with my friends and d family over Thanksgiving, Christmas and New Years this past year. Due to my downtime following my infusion, so we are taking steps to avoid that again this year. My Neuro also is going to start me on Provigil, my insurance does not want to approve it thus far. My doctor said he would deal with them so i'm awaiting approval at this time. Hopefully it will help with my lack of energy. That has been one of the larger hurdles in working toward my physical condition and therapy.

As for my depression, both my Dr and I agree, I don't do well on antidepressants. As a matter of fact all of them that have been tried have had the oposite effect for me. So the game plan on that is if I get to where I can't overcome the blues, I am to seek therapy first off, or get to feeling I want to go play on the railroad tracks, then I am to call him and we will start trying some other stradgies. I think a lot of my depression issues stem from my grief, isolation and just plain feeling worthless and alone. When I can see the beauty in life, it doesn't seem to bother me as much. When I get into that space of nobody likes me, nobody loves me, nobody wants/needs me, Im gonna go eat worms space.... Well .... I get to just wanting to it all to be over and done. As my Dr and I talked, he and I discussed that depression tends to go hand in hand with MS. So I'm working on some new coping strategies. Along with playing my harmonica, I can't think of a much better way to work out my blues.... 😁 making positive progress is a definate help with the Moody blues. My doctor and I also discussed why it was that I felt so good a day or so following My infusion, I always suspected it was due to the steroid, he said no. Its due to the Benadryl in my IV. So there's the important part of why they give that prior my infusion. This time around they are going to draw blood for a complete workup before my infusion, so praying that is all fine as well. I have had ups and downs throughout this year, trouble getting rid of infections, longer recovery times, but all in all... things are going better. It's a slow process, but the gains are definatly there. As always, y'all are in my thoughts and prayers.

God Bless Everyone,

Allen

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Thank you for your very honest, truthful account, no doubt it will help lots of people on here who reads it. Your doctor sounds as though he listens to you, so that is a blessing in itself. Another blessing is your harmonica, you should post a piece so we can all appreciate how good you are. Many blessings Jimeka 🙏 🍫

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I am absolutly blessed, on so many levels. My neuro/specialist, his father had MS. His heart is in it and that makes all the difference. Stormy harmonica, well, I have been playing with the idea of finding apieceof music that I can play and post that isn't currently copyrighted. All of the music I have been playing to are copywritten. I actually am in the process of writing (in my head for I can not read or write music, well a little. Kind of like on a toddlers reading level) a harmonica part into music that has no harmonica in it. I am going to work on recording some of the ones I have done already and seeing if I can get any permissions to post it on our forum. Until then I have decided to find something I can share without copyright infringement. I have worn out 3 more harmonicas and should be getting them in the next few days. So hopefullybeforelong I will be doing just that. Thank you jimeka

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I will look forward to it. 🎶

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Hello Allen, glad to hear overall you’re making it and sorry to hear about your down time. I hope you feel better and wishing you all the best.

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Thank you Royjr

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Thanks for the update Allen! I have missed you! Keep playing that harmonica.

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Thank you Morllyn, I go into my hermit mode just trying to sort out life. I tend to get kinda negative when I do... I take the time to, well, quite literally Soul Searching. It's Justin my nature, on the Meyers-briggs personality scale, I am an INFP, making up only about 4% of the population and its just apartof who i am in dealing with stuff. It takes me, at times, long peroids of isolation to work through stuff. That being said, Anyone is free to send me a meaasge at any time if they have questions or just say hi. I can pretty much gaurentee i willbeplaying the harmonica.😁

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Glad to hear that you are still playing! Capture a little clip of yourself playing for us, I saw the first one and it was really good.

Take care!

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Thank you Morllyn

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So glad that you are on a positive trajectory with ocrevus.

Two non RX ways that help with depression are

1 Setting goals -make a bucket list of things that you would like to do or accomplish. Stephen Hawking is an inspiration. I read that he was on a ventilator for the last several years of his life and yet he traveled to 16 different countries.

2 Helping others- when you find things to do for others, it takes the concentration off of yourself. If you can't get out, look for virtual volunteer opportunities. I've posted many in the past.

I'm looking forward to hearing next year's report.

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Thank you so much Iona60, I will definatlybe putting those 2 strategies to use!

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Keep us posted on your progress. We can all use new ideas.

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Explain virtual volunteer please?

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A perfect example of virtual volunteer would also be, our very own community ambassadors and our birthday ambassador. Thank you all for what y'all do for our forum. 😁

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Zooniverse.org is great to help animals.

Smithsonian transcription had many projects

I've found lots of others through the years.

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Thanks! For the up date. Glad u r having some improvements and wishing u the best 🙏

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Thank you erash

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Welcome back, Allen. Your doctor sounds awesome. I'm glad you are making good progress but sorry to hear about the rough patches. I, too, would love to hear you playing. What a wonderful way of releasing emotions. Music is so therapeutic. Best wishes in your continued journey.

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Thank you Tinker-Belle

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Hi my friend, you do realise that's why we are here right? To kinda help you through that. 😊 But I get it. I have that tendency also. Letting it go to long is not healthy.😞

Besides you took all the legos and matchbox cars! 🤣😂

Message anytime my friend!

J🌠

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Yes, thank you Jesmcd2, hey at least I didn't steal anyone's MARBLES! 😂 I takes A LOT of legos to build a Lego castle by the way.

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No kidding on the legos! Those things are tiny!! An NO, Allen5280 allegory can't have my marbles. 😞🙃🤣😂 I have them locked up! 😒Now to remember where I put the key.🤔🙁

🤗💕

J🌠

Hope your having a great day today!

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Allen, I wish that writing, as you do here, was as therapeutic as it is for those of us who read what you write. Your honesty about what you deal with really connects with others who feel the same way. Though I haven’t dealt with the same things you have, I feel as though you have a deep understanding of this this disease and its effects.

I pray for you for God’s comfort and strength and provision.

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greaterexp, thank you for your prayers. My writing on here can be, at times, a double edge sword. For my vision makes it difficult at times. Oh my double vision, uggghhhh... lol. I have to just laugh sometimes or i might completly fall apart. I cant even begin to count the numberof times i have written, or responded to posts only to get most of the way through it and just closed my tablet or deleted what i had written. Its not that i dont want to share, or anything against anyone. It's more, I get frustrated with what comes out sometimes. My negativity, when it gets it's way, isn't helping anyone, espically me. I saw apost where there were coments about the use of double negatives and or grammer and punctuation issues. I am GUILTY as charged. I see my errors, but find myself stuck on figuring out the corrections. Missed spaces, punctuation in the wrong spots, it's a wonder I have finally got control of my former temper because otherwise my tablet would have been in a million pieces along time ago. So sometimes, writing has the complete opposite effect, I am trying to come to terms with it and just say, I give up, who cares. In reality, aaarrrrrrggggghhhhhh 😣😟😢 it's one of those things I'm still "working out".

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Good to hear from you Allen5280 Glad to hear Ocrevus is working for you. Can't wait to hear you play your harmonica. We are always here when you need to chat or vent.

Jessie

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Thank you Jessie

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I also I have a really good day the day after and less of a good day the next day. Wondering why that is? I have only had the first two infusions.

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My Specialist and I discussed that. I had thought it might be because the steroids that are given prior the infusion but he said it wsss not. He said it is due to the benadryl in my IV prior to the infusion. When that wears off, I stop feeling so well. It's apart of why it is giving to help minimize the shock to the system of the specific b cell in the immune system being wiped out.

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thank you

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Allen I hope 🤞 that you and your doctor keep going on the path of getting you something to help with your down time after your infusions. Hopefully where you are the 🌞 is shining for you to enjoy 😊. Keep up with your harmonica. We all need things to keep us going. Stay strong 💪

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Thank you Babslover

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Thanks for sharing your thoughts. I can relate. Not sure, but I have primary Ms and not sure if I should go for new drug. Ocrevus is this for pain and the Ms? I start Medicare in July we still have it. I want to stay hopeful. Want to see four good friends in June. Don't know how I will feel. Just a drive hurts so much. Take care

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It is for PPMS as well as RRMS... I have had some Reduced Spasticity so that does help my pain levels slightly. There have been some reports of symptom reduction. I have a difference in mine as well. Well part of the time. The past few days have been pretty rough, still the ups and downs of MS. Hopefully with time It will be showing more improvement. Onlyz time will tell. I got my next infusion secheduled on the 5th of June. So here goes again!

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