Ocrevus user's ?: What have you found to... - My MSAA Community

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Ocrevus user's ?

Jesmcd2 profile image
Jesmcd2CommunityAmbassador
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What have you found to be the most beneficial since being on it?

Now, you know, I will be the 1st one to tell you that ALL DMTS are to slow the progression down! They do not heal us.😒 😂

Some of you have said that you have had good things.😊 Please share! 🤗💕🌠

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Jesmcd2
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carolek572 profile image
carolek572CommunityAmbassador

My balance and gait are better. I also noticed that my mood is better as well. Perhaps that was a side effect of being on the prior DMT. My neuro hasn't seen any disease progression with regards to lesions, but I haven't had any new lesions or flare ups since being diagnosed. :-D

kdali profile image
kdali

Well. It was a long list of benefits and I guess I’ll have to revisit this again when I’m back on it. I don’t think I could pick just one. Hot tubs? Man, I sure did miss those!

Not feeling like crap all day every day?

A healing cord lesion? That may be the most beneficial, actually, technically, but was it Ocrveus alone or a combination of lifestyle choices and my genetics 🤔

Who cares! I still don’t know anyone else who has had a MRI like that.

I dunno. Maybe next time I’ll get a super power or something.

Raingrrl profile image
Raingrrl

I have had zero improvements that I can attribute to Ocrevus. I didn’t expect any either. I’m coming up on Ocrevus infusion #5. Keep in mind that I’m on the “mature” side and our body’s ability to repair itself naturally declines with age. However, I have improved my balance somewhat through hard work in PT and yoga the last few months.

I’m about to have another MRI so hopefully it still shows stability. Fingers crossed!

Iona60 profile image
Iona60 in reply toRaingrrl

I'm right there with you. Nothing gained, maybe a little worse off. Getting an MRI on Monday.

Checky profile image
Checky

I have noticed improvement since I began the Ocrevus infusions. I,too, didn’t expect anything but I do have a bit more energy and feel more confident that I won’t fall down 10 times a day. My last MRI hadn’t changed. I am happy that I decided to try one last thing!

hairbrain4 profile image
hairbrain4

I just had my 2nd full dose last week. I am doing great. Almost all of my MS symptoms are gone except for a little numbness in my toes. The CogFog is gone, the heat sensitivity is gone - I was able to be outside and garden this summer without a relapse. The muscle spasms are gone along with the restless leg syndrome at night. I still have some cognitive problems with recall and comprehension when someone is talking to me. The fatigue is also gone. I feel really good most of the time.

kdali profile image
kdali in reply tohairbrain4

I think I missed your good news, so a late congrats to you on the escape from your MS symptoms!! 🎉🙌🏻👏

rjoneslaw profile image
rjoneslaw

my balance and gait has improved. my spasm has relaxed.I.m less fatigued.

earlier this year I had to go from a cane ( used from 2.016-Jan 2019) to a walker (Jan 2109 - present) because my balance has improved I have been practicing walking without the walker and cane at pt and home

Juliew19673 profile image
Juliew19673

I can feel my feet and legs; balance still iffy, but overall, much better and waiting for my 4th dose in December and looking forward to it!

twooldcrows profile image
twooldcrows

use to have to use a cane all the time and if i squatted down took for ever to get back up ...only use if going to walk for a long time ...can be out in the heat longer with out any problems ..worked in the yard a lot this summer couldn't before if warm at all ...my dizziness is nothing compared to what it use to be ...it was just terrible i still can have it if i have gotten over heated really bad....don't fall as much as i did before ...it just has really helped in so many things ...i know it isn't to fix it but has brought back things i couldn't do before ..fatigue isn't as bad as before ...when i was first on Avonex i would sleep eat sleep eat ...it was so terrible ..i have a very full figure now ..it is hard to get it off though...i use to think 130 lbs was fat now i wish that was what i weighed now ...anyway i do feel it has done wonders....

janetb1968 profile image
janetb1968

Hi I’m on Tysabri and it’s sorted out progression and no new lesions but I still have my symptoms- crap balance and overactive bladder! So I don’t know if it’s the answer or not! The bladder is being sorted out, I’ve got single use catheters and medication - so I will see how I get on xxxx

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