am I the only Rip Van Winkle out there

[pamgarner]

It seems to me I am napping or sleeping all day,i know some meds make you sleepy and maybe heat too but I think I only awake about 6 hours a day,am I alone in this ?I am so much more fatigued than usual.I have ocrevus thursday ,maybe a change?

[agapepilgrim]

Me, too. I stopped fighting the fatigue and let it win. Up about 6 hours a day. I feel like I am half living. But that’s okay.

[pamgarner in reply to agapepilgrim]

it is nice to know i am not alone,livin in a dream world i guess

[robster1]

Hey Pam. I just asked my neurologist the same exact question last week! I’m due to get my infusion this Friday. He said the Ocrevus diminishes as time goes on and by the end of the 6 mos we start feeling more fatigue, we become more spastic, etc. in other words (my words) it runs out of fuel.

He said he would back up my infusion following this one by a couple of weeks and that would help eliminate the problems.

[pamgarner in reply to robster1]

my ocrevus is thur.hope he is right

[robster1 in reply to pamgarner]

Let me make sure I’m clear. I will have mine Friday and the next time will be in 5 mos & 2 wks later.

[pamgarner in reply to robster1]

my dr told me you could have it 5 months but you would have to have bloodwork done to see if ocrevus is still active in your system,then if it is you can turn it into insurance for them to pay,i guess they want to pay every six months

[robster1 in reply to pamgarner]

That’s probably true. They certainly aren’t gonna pay if they don’t need to. Lol

HAVE THEY EVER?! 🤬🤬🤬😎

[Iona60]

I just had my Ocrevus infusion on Wednesday. Today I am finally turning the corner and regaining energy. I hope my spasticity gets better. Each round of Ocrevus seems to be different for me.

[pamgarner in reply to Iona60]

you have given me hope,thanks

[timothy228]

yea me too seems like i nap and sleep for days strait some times my clock has been shot for years its 300am now maybe one day! the fatigue is one of many ick things about m.s. non production time wased and i dont even fell any rested with all the naps and broken sleep

[pamgarner in reply to timothy228]

it seems with ms.we have lost control overall,the mean beast!

[rjoneslaw]

I have to admit. I’m not fatigued anymore. I don’t know what happened. I don’t really sleep according to the dr. He tried to get me to take sleeping pills I told him no

[pamgarner in reply to rjoneslaw]

well you sure are lucky not being that sleepy but are you in more pain with all the awake hours?

[rjoneslaw in reply to pamgarner]

no I'm not in pain.

I think I have bad sleeping habits from school.

[greaterexp]

It would seem that your Ocrevus's effects have worn off. When I had the first relapse, I pretty much slept for three days straight and afterward had to take naps for a while. It would make sense that you would have more symptoms when the effects of the med are at their lowest. I hope you get much relief when you get your infusion!

[pamgarner in reply to greaterexp]

me too

[Sweetheartonvdayl]

Hi pamgarner😊

That's the nature , for me & so many others , of the disease....

I can't sleep at night but I'm in the middle of a movie& conk out .

🙏❤Lisa💕

[pamgarner]

thanks the thing,i sleep at night,go to bed at 7pm,wake at 6am,nap at 9,12,3,bed at 7 ,maybe i will do better after treatment thurs

[Violonchelo]

You must to speak with your doctor

Sorry, I hope you will better in the future!

[pamgarner in reply to Violonchelo]

i am sure i will thanks,i think i may change treatment????

[carolek572 CommunityAmbassador]

I will be thinking of you during your infusion, pamgarner and wishing you the best! I hope that it alleviates your fatigue. Let us know how you are after the infusion. In the meantime, gentle vHugs to you

[pamgarner in reply to carolek572]

thanks your message made me tear up i feel ms.terrible!I hope it is the wonder drug!

[carolek572 CommunityAmbassador in reply to pamgarner]

It is good for me, and I am hoping that it is good for you, pamgarner I didn't mean to make you tear up, I just wanted to let you know that I am here to lend an ear, and send you encouragement. We all need that.