SAW MY neurologist on Tuesday - My MSAA Community

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SAW MY neurologist on Tuesday

ssdw1958
ssdw1958

Went to see my neurologist on Tuesday well I asked him did you find a cure for MS he said no. So this is what happen he did all the regular squeeze your hand look at the card to see how your eyesight is and all that stuff. He asked me about my medications and he asked me about the Ocrevus and if I thought it was doing anything and I told him I didn’t think so. I said I was feeling a little bit better right afterwards and I thought that was because of the steroids. He said a lot of people was saying the same thing so he suggested that the next dose of Ocrevus I don’t take the steroids and I agreed but he did say that I should take a antihistamine the one he gave me is Fexofenadine 180mg AKA Allegra tablets I am to take them once a day for three days.

I am game to try this why not. I don’t want to stop talking something when I’ve only been on it for the first 3 doses. We have to remember that this is a new drug what’s the use in stopping something before we even know if it works. We have to remember there is no cure for this monster we all call MS so why not do it

Boy I’m starting to sound poetic now that is scary LOL.

I HOPE EVERYONE IS HAVING A GOOD DAY!!

P.S. after my visit my son and I found this great deli with great sandwiches and best of all great Italian pastry.

9 Replies
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Hey ssdw1958.

Sooo happy of your good visit with your neurologist!

You gave us a lot of good info and now I am curious about what to expect with regards to my next infusion which will be in late August. I was told not to expect a lot of noticeable changes until after a year, or two. So I will be patient. However, I have noticed that my gait and balance are better, and also I have clearer thinking and I am in a better mood.

So, keep smiling, my dear,

Carole :-D

ssdw1958
ssdw1958 in reply to carolek572

Thanks you to:)

Yay! Good news for you Sandra, that is great, i hope everything wrks. Our for you! praying & Love to u!😍😻🙏🙏💞Blessings---Jazmine

ssdw1958
ssdw1958 in reply to Jazzyinco

Hi Jazmine it is good to hear good news and a doctor that listen to you. One other thing that went well I had some one who knew how to draw my blood with out bruising me. YEAH

Jazzyinco
Jazzyinco in reply to ssdw1958

Yeah, tht helps, mine up here i cannor stand them, they just poke hard & my dang arm goes numb, 😱 they won't listen to any instructions or anything,, I always have to put clove oil on both arms & top of hands, cuz u never know where it needle is goin!😷 jerks!😡 oh clive oil is a great natural number...BTW. Blessings👍😍😻🙏💘Jaz

ssdw1958
ssdw1958 in reply to Jazzyinco

Oh I’ve had or should I say they try to take blood Out of me and I end up looking like a pin cushion one day I had about four bandages where they pocked me. But one time my husband was with me and he couldn’t believe I was taking it so well I don’t think he realizes how bad it really hurt that day I had two different people try to get blood drawn out of me. And another woman had drawn blood out of three little girls with out a sound and they all came out. She came over to me and with in a half a minute she was done with me. I have raynards which means I can get cold when it’s 80*f so my veins shrink up sounds like fun NOT

OH WELL THAT’S ALL FOR NOW YOU HAVE A GOOD DAY!!

when I started Rituxan, it took almost two years before I started feeling it's affect. It is hard to know because it isn't a sudden or very noticeable change. I just didn't need a wheel chair as much [now hardly ever]. But mostly it shows up in the mri that a change has taken place. But remember, it will not fix damages already happened. Most all of my symptoms are from prior to the Rituxan. But now new ones since starting Rituxan. Keep on the Ocrevus and look for the subtle changes, like not needing a walker as much, no new symptoms, less fatigued [not gone]. I think you will find some changes. I think some people can expect too much or not notice the subtle changes that really add up to a better quality of life. Since Ocrevus is akin to Rituxan, I would be curious of your findings after being on it a while longer. Yoou know you have my love and support and my thoughts are with you. Be good to yourself always :) ~terry

Sounds like a good plan!

The risk of infusion reactions supposedly decrease each time. Why not simply assume you will get a short term boost with the steroids and monitor the long term effects of the Ocrevus? The steroid dose is much less than that given for a relapse and I think it may take up to 2 yrs before seeing the benefits of Ocrevus. Perhaps rather than look for improvement monitor for no worsening? There are others more knowledgeable about Ocrevus. Hope they have chimed in. 🌈

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