very mild MS symptoms: start Ocrevus now... - My MSAA Community

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very mild MS symptoms: start Ocrevus now or later?

anaishunter
anaishunter

Just diagnosed with MS after a double vision episode and multiple MRIs. I barely have any symptoms, just mild sensations/electric feeling on my knee that I would rate 0.5/10.

Should I start on Ocrevus now or wait for the next serious flare-up which might never happen or happen years from now?

I'm 52 and read contradictory comments about MS being more aggressive if diagnosed at a later age.

Any advice? experience?

20 Replies
oldestnewest

Hi sorry to hear you have MS. I have had MS since 2004 I was45 back then my doctor never listen Ed to me so I was diagnosed later than I should have been. But my question to you Is what has your neurologist recommend to you to have ocrevus or any other medicine I am on ocrevus right now I can't really say if it is doing anything because I have only has 2 half doses and then 1 full dose.

I just want to let you know that we are not doctors here but you will get a lot of feed back here on any thing you ask. So I know that I really didn't tell you what you wanted to know. But that is your choice not anyone elses.

Hi, & welcome to our precious family of msers, anaishunter, you should ask your neurologist about this, & yep it can progress but if u start treatment in the early stage, i've heard u could nip it in the bud! At least pribably slow any progression! I was mis & underdiagnosed for almost 11yrs. Finally this yr. I received my dx of it progressed! So, many Blessings to u. Hope u can keep theprogression at bay!😅🙏😍--jazzinco

You have to get with your neurologist. I wish I could give you encouraging news on Ocrevus, but I've only had one dose so far. The next one should be this month, I haven't seen any positive results as of yet. But who knows? Good luck and I am a believer that sooner is better than later.

Craig

Anaishunter welcome to the community,hopefully your symtoms have been diagnosed early.These sensations can move around to different parts of the body.ie back of legs,toes,side of head etc.As you can see on the forum,everybody has different levels of this awful disease.Hope your treatment works & you can look forward to the future.Best of luck.😀🍀Eugene.

Talk to your neurologist first and utmost of importance.

Now you could look at taking an MS med like birth control do you really want to get pregnant or would you like to prevent it from really happening....hmm just something to ponder :)

I'm wishing you nothing but the very best.

Take care of You

KC

.

Hi I was diagnosed in December last year and I'm now having iv Tysabri every 4 weeks. I'm 49 so who knows but I would speak to ur Neuro about it all. I'm in England btw xxxx 😊😊😊😊

Jesmcd2
Jesmcd2CommunityAmbassador

Welcome to the wonderful roller coaster of MS anaishunter I am so sorry for your dx.

Right now your prob feeling a bit overwhelmed. And that's ok.🤗

If not, even better.☺

I was 49 at dx, 3 yrs now. And the thing with DMTs (disease modifying treatment) is the HOPE TO STOP them from happening at all. 😊

This something to talk to your Neuro about for sure! And a personal decision.

I take copaxone 3xs a wk ☺and doing great so far!

🤗💕

J🌠

Ps you don't want a Relaspe. 😟

I was diagnosed twenty three years ago and started DMT right away to slow down progression. One of my best friends wife has had MS for 30 years and was a nurse. She did not do anything about it and ten years later she had a major relapse that started her downward slide. She then started on Copaxone and has stabilized, but she is house bound and in a wheelchair. I truly believe that by starting a DMT early is why I am still upright and going 🙏. Get a neurologist that specializes in MS and a good family physician that also understands and get them on the same page. 🙏😉🐾Ken

CalfeeChick
CalfeeChickCommunityAmbassador in reply to Kenu

Great info Ken!

greaterexp
greaterexpCommunityAmbassador

You’ve already received great ideas from the group, but I’ll add my welcome and some thoughts.

Everyone’s progression is so different with MS. It’s unlike nearly every other disease in that it is very individualized. The problem with doing nothing is that you can’t know what your own course will be. I didn’t want to get down the road having rapid progression and had deep regrets about having missed the opportunity to have prevented or slowed the progression. For me, I feel the evidence is in favor of a DMT. Diet and exercise are great things we should do for our overall health, and they can help mitigate the symptoms of MS, but I don’t personally feel that they actually treat MS.

That said, you will surely investigate DMTs and will make the best choice for you and your family with your doctor’s help.

Let us know what you decide. We’re akways here.

Good question, and one that I have seen others voice, but I do not know the answer. That is one you can only answer for yourself, after much research. 🤷‍♀️🤷‍♂️

I have had this for over 40 years, and am still doing relatively well (mostly sensory issues) without being on a DMT, but my MS is not yours and I only give you my information for comparison. They did not have DMT’s when mine started, and my MS had “calmed down” when the first one came out, so I did not feel the need. Again, my MS is probably different then yours so think hard before making your decision. 🤔

To start treatment or hope it "just goes away" ?..... Do you take the chance?.... I do understand your dilemma. The only difference between you & me are the years between our diagnosis. You have a choice that many people, like me, never had when they were diagnosed. I would have sold my soul, just to have had the opportunity to be offered MS medications.

In 1990, I was informed I had a mild form of MS called Benign MS. I was told that people whose first symptom was visual problems, usually have an "easy go" of MS. I held on to this statement, it was my lifeline....but I also knew my cousin's MS started with double vision 10 years before my fist MS symptom. My cousin, Gale, has been a quadriplegic for over 30 years due to MS.

Anyways, my first symptom was optic neuritis in 1990. My relapse was in 1993 when my legs went numb & I had to use a wheelchair. I remember my husband pushing me & our baby to our local library where we would read everything & anything on MS. At the library, we discovered a drug called Betaseron that was in clinical trials.

My MS specialist told us it was a break through drug, but it wouldn't be available for another few years. Our hearts sank. I was only 24 yr old, I had a baby to raise, I was in a wheelchair and I was scared.

Sorry for the long letter, but I just want you to know that MS is a mean ugly beast. Both myself & my cousin were told at the beginning of our MS journey that we had a mild form of MS. I was the lucky one. My MS "just went away" . I only had 3 relapses with no lasting disability and I've been MS free for over 20 years, up until this past April. Gale was not so lucky.

All the best to you

Sue

Thank you for all the great insights. My neuro(s) have been great and they do recommend starting on Ocrevus.

It's just hard for me to fathom taking such a strong drug while right now I feel pretty much 100%.

Take a DMT right away, u will not regret it ut after the first relapse u will wish u had started immediately.

Start immediately.

Royce

Thanks. It's my plan to get on Ocrevus.

What's people experience: How long does it take to get insurance approval, clear up various vaccines, and more?

Now that I've made a decision, I just want get started!

JMWCO
JMWCO in reply to anaishunter

I had some issues with insurance and approval at first and it was a waiting game. I suggest making sure you know who is following up with who. I lucked out that mine was approved the Wednesday before I started my 1st ½ does of Ocrevus (2 weeks ago).

As many of the people in this thread mentioned having the DMT vs no DMT is your choice but the unknown is what scares us all. Everyday can be different and each of us responses differently. I'm not old and i'm not young - i'm in the middle of my life where i'm now closer to death then my birth but i have two small children and no matter what i change for diet, exercise and life style i want to 'take care of my kids' before they have to 'take care of me.' I had other factors as well but figured my frustration with delays in figuring out that it was MS took several months and then once that was determined it was still another 2 before i was able to start treatment. The delays drive me bonkers..but alas I think i'm past that part and now it's just living my 'new normal' whatever that will be.

Good luck to you and keep reading and reaching out to the group. You may not think it helps all the time but it's a group of people that are faced with the same choices and different opinions daily... how we deal with them all is on us.

I wish you luck in your choices!

Just to make your life hard, what others experience may not be what u experience. Jump in the pool hope for the best. What u do will not cure u but should slow down progression at least.

I started young 28ish so how effects older people I can not say. Insurance approval you are best off talking to your Dr and the NMSS people, they are likely to have people with experience. I do know that Tecfidera does have a support system that help, I am sure that Ocrevus does as well, ask them.

Renumber just keep asking questions until u understand what you need to. I sugest the drug company.

Best of luck.

Every day in someway we really are getting better and better,

Royce

CalfeeChick
CalfeeChickCommunityAmbassador

anaishunter I just came across your question and as others have said, "Welcome to the group nobody wants to join, but we are so glad to have you here." While none of us are doctors, we do learn allot about MS and our journeys. I definitely think you should discuss with your MS Neuro, deal with the insurance and go from there. Me personally, I would start it as soon as you can to slow down or stop the MSs progression. You are a young woman with a long life ahead of you and need to make the best of it. I'm much older and have a daughter your age and would want her to do everything she could to slow it's progress. I was diagnosed at 68 yrs after a long, healthy active lifestyle and still have times of denial! I'm trying to persuade my MS Neuro into a DMT (disease modifying Therapy.) I have done well on neuropsychological testing, just had a barrage of blood tests to determine if I have a healthy immune system and it was off the charts immune to everything, (except MS😊) Feel free to join in chats, ask and answer questions, again welcome to our MS family!

I 100% agree with you. MS specialist strategy was to put me on the most aggressive DMT available to me. I've been on Ocrevus for 5+ months, planning round 2 in December. I'm stable (very very mild physical symptoms), I've had no relapse since the initial in Jan 2018, I feel slightly better - less fatigue, more energy, better clarity of thoughts and many of the things that are hard to measure. I can't wait for the 6 month MRI in December. My mantra is "Use it or lose it", or trust your brain to find new pathways around the lesions but you have to push it to do so, so I exercise my brain and my body as much as I can.

Yet, I still choke at the cost of the treatment.

just re-reading this post of mine a year ago when I first joined this forum after I had just been diagnosed.

It's amazing to read how many great advices I received at the time. The diagnosis was incredibly overwhelming - so many questions, so many maybes, so many opinions, and a feeling of hopelessness.

I am so glad I got on a DMT right away. I did not realize how much damage MS had done until I started to get better - less fatigue, more balance, getting out of the cog fog. It's like I'm able to start a new life (almost).

Thanks again to everybody on this forum.

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