1 Year and Still Walking

[Jen's Solitude]

Hi Folks, Just wanted to report that this month marks 1 year of Ocrevus infusions and I am still walking, albeit not as far as a year ago. And my brain MRI shows no changes as well.

My neuro said that was our best case scenario so I expect he will be happy when I see him December 4th.

I have noticed a small increase of strength in my right leg especially my foot and toes. An unexpected improvement.

Otherwise that's about it for my update.

[agate]

Dar, how nice to have news of you--and such good news!

Is it your third Ocrevus infusion that you recently had or are about to have? Is the hospital close to where you live?

I've heard really good things about Ocrevus.

[Howie]

That's great news Dar!

[stillstANNding]

Glad to hear this news, Dar.

ANN

[Jen's Solitude]

Agate I can't remember if I have had 3 or 4 infusions. It takes about 40 minutes for us to get to the hospital depending on traffic. Thanks everyone for the replies.

[Virginia]

Dar, thanks for keeping us informed about the Ocrevus. Glad it is good news for you. I hope for even better news after another infusion or two.

[Lazarus]

Hi Folks, Just wanted to report that this month marks 1 year of Ocrevus infusions and I am still walking, albeit not as far as a year ago. And my brain MRI shows no changes as well.

My neuro said that was our best case scenario so I expect he will be happy when I see him December 4th.

I have noticed a small increase of strength in my right leg especially my foot and toes. An unexpected improvement.

Otherwise that's about it for my update.

Hello old friend!
Good news. I am so happy for you. I have been on rituxan (essentially identical to Ocrevus) for a number of years and I too have good results.

Glad you stopped in to update us.

[SuzE-Q]

Great news, Dar! How exciting to see improvements too!

[ssusan]

Hi Dar,
So glad it’s doing something for you. I have been on it since 7/17. It does not appear to be doing anything. My MS has continued to progress . But I guess I’ll continue to do it every six months as there is always the hope it will do something and there doesn’t seem to be a better option for me.
Nice to hear your voice.

[funnylegs4]

Jen's Solitude, YAY! That's so wonderful!!!!!

[Jen's Solitude]

Thanks for all your comments everyone.

Susan I was wondering if you noticed any improvement. Are you still able to walk? If so perhaps that means it is helping. Or maybe it is slowing down the progression. It is hard to find benefits in such small increments but my neuro suggested that my success would be measured in small doses since I have had MS for 25 years now.

Curt takes comfort in hoping I will remain mobile and continue to walk. Of course I hoped for a little more but will settle for what I have.

Laz always great to hear from you.

[ssusan]

After first 1/2 dose I did, but some of that was the steroid pre-drug. Nothing from the second 1/2 dose nor

the two full doses I’ve had since. I had the worst exacerbation I’ve ever had in July. Couldn’t walk without walker which
Didn’t fit in back of Impreza , or it did but couldn’t fit anything else but I wasn’t driving for two weeks. When I bounced back enough to drive short distances and gingerly get down driveway with Canadian crutch. I need to be able to have other hand on something for balance.
I can carefully walk down steep driveway using my husbands truck as touchstone. Now that there is snow on the ground?
Was able to renew license in September.
Bought a car that works better for me. Better visibility, bigger storage.
A day at a time. Is it helping? Who knows. It’s not hurting.
I was diagnosed in ‘99 but had probably had it for 5 or 10 years. It did remit
Several years before dx in ‘99.

[agate]

Dar, a while back you mentioned that you've been stuck in bed for years though you got up to move around at times with the rollator. It sounds as if you're walking more now, or no?

You were looking for a new primary care doctor too, a while back. I hope you found one.

Is the diabetes staying under control?

Hope you don't mind the nosey questions. You were an important part of this board for a long time. I can't help wondering how things are going for you.

[Jen's Solitude]

Susan taking life a day at a time is a good way to live and what I try to do as well.

Agate resting in bed is still my default position and I am walking the same amount. I have a new PA and she is helping me get my diabetes more in control. I am taking 50,000 IU of vitamin D and she changed my BP med which is working as well. I will see a cardiologist next Tuesday as per her suggestion so that she can make further adjustments based on the results.

I hope handling all these areas will increase my energy and allow me to be a little more active but will have to wait and see.

[stillstANNding]

Dar, is that 50,000 units of Vit D or 5000?

ANN