Looks like my neuro wants to change treatment due to new lesion. 😔

[Raingrrl]

I had new MRIs done last week. My neuro called today and left a message that my brain MRI was stable but my cervical spine showed a new, but inactive, lesion since my last MRIs in Oct. This is the first new lesion in over 8 years: 5 years on Tysabri and the last 3 on Ocrevus. I’m frustrated to learn this but not surprised to be honest. I’ve been having weird unrelenting medical problems since last October and have been trying to figure out what’s causing what. (I think that is called a fool’s errand!)

I have an appt in early May to talk about, in her words, a “new plan”. I’m grateful to still be doing pretty well considering I’m not young and was diagnosed over 20+ years ago but hate figuring out new treatment.

[Wnmaddox123]

I’m bummed to hear of your new lesion. Of course all of us here can relate to this diseases destruction of our bodies. Ocrevus is an aggressive medicine so maybe focus on the fact that only one got through and not many.

[Raingrrl in reply to Wnmaddox123]

My neuro is aggressive too. She called this “disease breakthrough” and isn’t ok with it. I’m just being whiney about having to look into other DMT’s.

[Sandydemop in reply to Raingrrl]

I don’t think you’re whiney. I’d want to know too. You’re being assertive

[erash]

So sorry to hear about new lesions and symptoms. What type of symptoms, if I may ask? Please let us know what next (DMT).

My MRIs are stable but disease is progressing too rapidly for my liking on Ocrevus. Neuro appt. next week...

🤗

[Raingrrl in reply to erash]

erash ...I could write a novel about all the cr*p that has happened to me in the months since Oct. it’s been a roller coaster. Most I don’t think is MS but don’t know what it is from. And unfortunately in the midst of it all my long-time Primary Care decided to change over to aesthetic medicine so I had to find a new doctor. 🤬 He obviously doesn’t really know my history but is trying to be helpful.

I have had much more fatigue than my “normal” fatigue. That could be MS but it could be Thyroid too. I was diagnosed with Hashimoto's last year but just started taking a med a week ago. The one new symptom that I’m convinced is MS is a sensory one. Several weeks ago, when I got up in the morning, it felt like I had drunk a beverage that was too hot and scalded my mouth. I couldn’t remember eating or drinking anything too hot and thought it was weird that this sensation was only in part of my mouth and my upper lip. It has subsided a little but not gone away. Really a weird one.

I also have an ongoing weird pain episode with my hands and arms that was horrible for awhile but has gotten much better. I have no idea what has caused it but I hate that I’ve had to take ibuprofen every day for months to calm it down. Although I do have to say that the new Advil/Tylenol combo does wonders for the pain.

I’m looking forward to meeting up with my neuro to lay out the timeline of all of it in hopes she can help me sort through the different episodes. Some things could have been because Ocrevus can make you susceptible to infection.

[erash in reply to Raingrrl]

Oh my! I’m sorry for what you’re experiencing. Probably important to sort out and know if something else is going on too—regardless of whether you go on a new DMT.

I know aesthetic services are another way to “help” people but it never felt like it would be fulfilling to me 🤷‍♀️

[Raingrrl in reply to erash]

Please let us know if you switch meds and what you choose. I have read that as you get older, > 55, the disease calms down so I was hoping for that but not so far. At least not in my situation.

[erash in reply to Raingrrl]

I am 62. No new lesions detected since I was diagnosed @ 2009 so with my symptoms progressing, and secondary or perhaps primary progressive MS there really is only Ocrevus and healthy lifestyle. Maybe my Neuro is aware of something new. 🤞I’ll surely let you know. Oops I forgot my other weapon 😁positive attitude, right?

[Sandydemop in reply to Raingrrl]

Same. Feel like I’m getting worse not better. People don’t fit into boxes of no lesions =no progression. I’m over 55. Dx 11 years ago. With new symptom of double vision. Doc said not to switch the drugs due to Covid. Now what?

[Sandydemop in reply to Raingrrl]

I hope you find something that would work for you. Please let us know what you find out

[Raingrrl in reply to Sandydemop]

I’m looking forward to my neuro appt to see what she says and recommends. She is a character but I like her. I assumed that since the the first couple of years on Ocrevus there was no progression that I’d be ok on it. I haven’t been following all the new meds so now I need to look into them.

[Juleigh21]

I’m so sorry to hear about the new lesion!! I think I’ve been following you on meds. I start kesimpta next month. Ocrevus doesn’t keep me stable.

[Raingrrl in reply to Juleigh21]

Did you choose Kesimpta or did your neuro? Seems I keep reading of people going that direction so I’m curious why that is. I hated doing the injections for Copaxone so don’t really want to go back to one.

[Iona60 in reply to Raingrrl]

So sorry to hear that Ocrevus hasnt' worked out for you Raingrrl . My neuro said that Kesimpta is like getting Ocrevus in an injection format. Will be interested to see what he/she recommends next for you. We started Ocrevus within one month of each other. So far, so good for me.

[Raingrrl in reply to Iona60]

Glad Ocrevus is working for you Iona60 . I thought it was working for me too. I honestly can’t remember when I had the last new lesion so it was upsetting to hear that.

[Juleigh21 in reply to Raingrrl]

When I started with my new neurologist and we decided to try ocrevus because I was having problems with Tysabri he already knew knew kesimpta was coming and the plan was always to put me on that drug. Ocrevus was only to be temporary and as he suspected it never lasted six months in my body.

[Raingrrl in reply to Juleigh21]

I don’t think Ocrevus lasts a full six months for me either. I experience a full month crap gap every time. Maybe that’s what allowed the new lesion to form. I’m so curious to hear what my neuro thinks about it.

[kdali]

I’m sorry you have a new cord lesion 😞

[Jesmcd2 CommunityAmbassador]

So sorry to hear that Raingrrl please keep us updated on what you decide!🤗💕🌠

[rjoneslaw]

good luck with the new plan u come up with

[Neworleanslady]

I’m sorry to hear that! What a pain to have to go thru starting a new med! I’m curious where a dr. goes after ocrevus. Theyll find something. Let us know. Prayers to you.

[Raingrrl in reply to Neworleanslady]

I’m curious too. My neuro will definitely have some opinions about it all!

[carolek572 CommunityAmbassador]

Sorry to hear of that new lesion, Raingrrl

Be strong, keep smiling and know that I am here for you with a sympathetic ear

[Raingrrl in reply to carolek572]

Thanks! I’m slowly accepting the results and what it could mean. I’m now looking forward to my appt with my neuro to figure this all out and then go forward.

[sashaming1]

I've been diagnosed with RRMS since 1986 and have only had brain MRIs. Maybe because my symptoms don't involve the things that the spine could affect? Hang in there - there are a lot newer DMTs out there.

[Raingrrl in reply to sashaming1]

Thanks. I got complacent since Ocrevus seemed to be working for me and so I don’t know a lot about the newer meds. My neuro will certainly have some recommendations.

[greaterexp]

I'm sorry to hear this. I hope the planning process will be smooth.

[Sandydemop]

sorry to hear about the new lesion. How is your walking/etc? As we know lesions don't necessarily correlate with function.

[Raingrrl in reply to Sandydemop]

My walking is the same as it’s been. I tried looking up what the cervical spine can affect. At the level where the new lesion is, it affects upper body movements. I don’t experience any issues with that. So who knows? I’m looking forward to my neuro appt in hopes to get this all sorted out.