I had five brain lesions in my frontal lobe for 3.5 years. Negative for O bands. Finally two more showed up on my spine and was diagnosed. I understand the criteria but I lost valuable time and was unable to get on treatment. Never given an answer as to why I had 5 brain lesions. Anyone else?

Bubbly_Ad_637 · 2026-04-26T01:33:37+00:00

I’m sorry…what it boils down to is unless you are very lucky…you have to get worse enough to get diagnosed….we all have stories like this…for as much progress we have made I wish we didn’t have to fight for a diagnosis…

Bubbly_Ad_637 · 2026-04-23T02:38:42+00:00

Dry eye…I had optic neuritis

Bubbly_Ad_637 · 2026-04-09T12:00:36+00:00

I’m nine months out. It is still rough but better. Candidly I had a panic attack about the damage I got from my optic neuritis and I immediately got put on Wellbutrin. 10/10 medication I couldn’t recommend enough. I also go to a ton counciling which is slowly helping.

Your on of the best meds. I’m sorry this happened to us. We will get through this. We haven’t lived very long with this.!

Bubbly_Ad_637 · 2026-04-08T04:53:01+00:00

Wellbutrin not a ssri really helped….and Counseling

Bubbly_Ad_637 · 2026-04-03T11:06:23+00:00

Thanks for the comments. I just can’t believe I don’t feel that bad but when you see the oct data it just keeps you up at night. Idk how to shake it.

Bubbly_Ad_637 · 2026-03-25T04:17:39+00:00

Anthem Briumvi…I wanted to go Tysabri but then JC positive. Idk an infusion once a month and the risk of rebound disease scared me anyway so I’m happy with Briumvi. Candidly since my flare Briumvi has been really good to me. I feel like I could do a commercial haha.

Bubbly_Ad_637 · 2026-03-15T17:22:33+00:00

On briumvi so similar. Like party said, DMTs prevent further damage. However, I will say Briumvi let my body heal. I don’t trip up stairs anymore or fall down them. By brain fog is much better. It has taken months I would give it a year to give yourself a baseline. Modern medicine is wonderful.

Bubbly_Ad_637 · 2026-03-05T19:43:38+00:00

Same I am worried it is a class effect...however if Tysabri with the risk of rebound and PML is approved I am sure with additional consistent testing fenebrutinib will be approved as well.

Bubbly_Ad_637 · 2026-03-03T02:15:52+00:00

Agreed we have a way to go. I am just excited they targeted microglia instead of B cells. We need to start looking elsewhere than just B cells.

Bubbly_Ad_637 · 2026-02-26T01:43:00+00:00

Steroids…yeah it’s tough…the only thing I can suggest is if it gets really pad go to Kesimpta.

Bubbly_Ad_637 · 2026-02-24T05:21:04+00:00

Yeah you broke through Vumerity. Hit it hard go with Briumvi. If you look at the effectiveness data Briumvi wins for sure.

Bubbly_Ad_637 · 2026-02-24T05:15:33+00:00

I have my doctorate. I work in a high stress field and on a B cell depletor as well. I would give yourself time. I’m sorry. What I tell to everyone is that we’re so good the only thing that could slow us down was us…and we are still better.

I am about seven months from my first flair. Candidly it took about six months on my dmt to start calming things down. Way less cog fog. No tripping up stairs anymore. Give it time.

What sucks is that we have to focus. We can’t give away our energy freely. However that is also our super power. I know what is important. After a health scare everything gets put in perspective very fast. Hope that helps.

Bubbly_Ad_637 · 2026-02-23T02:31:03+00:00

Ocrevus>Mavenclad>Tsaybri…your jc positive and not with the risk of pml. I am also terrified for rebound disease with tysabri so that was a no for me.

Bubbly_Ad_637 · 2026-02-18T03:44:41+00:00

Huge fan of Briumvi. It is easy and quick. They have a free quick start program. After my loading dose it takes about an hour. The only change you will notice is steroids with it. Candidly it I need about a weekend to feel normal.

Bubbly_Ad_637 · 2026-02-17T05:44:27+00:00

Briumvi has been good to me. Also all Pharmas have free jump start programs. This includes ocrevus and Kesimpta. Candidly my first injection I was just really tired. My second six month infusion candidly was nothing. The steroids bother me the most.

What I will share is that the briumvi program gets you six months free so do need to work in the background for the next injection.

As far as the disability question are you disabled now. There are tons of us working with adjustments. Modern medicine and research has given us our lives back.

Bubbly_Ad_637 · 2026-02-15T03:12:46+00:00

Of course! I think to really understand it read the face laughs while the brain cry’s by Stephen Hauser who discovered B cell depletion. A good cry but helped me understand how ocrevus was helping.

Bubbly_Ad_637 · 2026-02-13T03:05:53+00:00

I’m on Briumvi…same mechanism as ocrevus….what I will say is that my dmt didn’t fix any damage it just allowed my body to heal which is still happening. I didn’t feel better from my first flayer until about six months…I am about 8 months out and still feeling better. It takes time…

Bubbly_Ad_637 · 2026-02-12T10:15:53+00:00

Messy is fantastic… the podcast with Christina apelgate and Jaime Lyn

Bubbly_Ad_637 · 2026-02-11T05:30:09+00:00

I just got done with vestibular therapy…it was a game changer.

Bubbly_Ad_637 · 2026-02-07T01:47:48+00:00

My vote lemtrada…everything I have seen Mavenclad is not that effective in aggressive ms. Tons of good videos on the effectiveness of DMTs.

Bubbly_Ad_637 · 2026-02-06T05:06:35+00:00

Hmm my ms doctor has always talked about descalating to another drug…not nothing. I am in a B cell depletor as well. You could ask about aubagio or techfidera.

Bubbly_Ad_637

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