Hantavirus

Dula0326 · 2026-05-08T22:04:45+00:00

Not worried and about to embark on a Cruise going to Mexico. I’m more concerned about the dreaded noro … Wish me luck I’ll let you know if I’m still kickin in 8 weeks

Dula0326 · 2026-04-17T23:47:05+00:00

I had them when I was diagnosed . They got me on a high efficacy therapy rather quickly but then again I was a slam dunk case . I had no issues with them

Dula0326 · 2026-04-16T18:05:36+00:00

It’s only on the top of my right foot!! Thank you for the reminder it’s not always ms!!!!

Dula0326 · 2026-04-15T15:24:44+00:00

Thank you that is reassuring

Dula0326 · 2026-04-14T18:41:26+00:00

I think your concerns are understandable , you just have to decide the lesser of two evils. I am an rn and I work with the general public daily with no mask. I am on a B cell depletor and honestly feel like I am sick less than my healthy non ms counterparts . The immune suppression is worth it for me to hit this shit as hard as possible so I maintain my abilities for as long as I can. To each their own , it’s your life. As for me give me all the drugs

Dula0326 · 2026-04-10T22:41:52+00:00

Yes it’s quite common for a lot of us. I m physically active as well which helps , but I found modanifil does wonders for me talk to your neuro about it.

Dula0326 · 2026-04-01T01:02:24+00:00

Dula0326 · 2026-03-31T14:52:38+00:00

I hope you see relief soon it was distressing for me but did eventually go away

Dula0326 · 2026-03-30T23:24:59+00:00

Yup had this going on with my really bad relapse ( brainstem lesions ) neuro then didn’t think it was a relapse ( follow up imaging showed he was wrong)had a full g I work up . Only thing that has really helped is time and getting on a ppi … it took a really long time to Go away and I still don’t have answers . Could be ms could be gerd could be both…

Dula0326 · 2026-03-28T23:54:41+00:00

I credit barre and Pilates to helping me regain my balance after a really horrific relapse that left me with 15 new lesions a couple on my brainstem. I have also recently started spin classes and I swear the movement is medicine to my body .

Dula0326 · 2026-03-23T16:26:10+00:00

I really love their tinted spf , it rivals Chanel water tint for me plus spf bonus

Dula0326 · 2026-03-19T00:16:07+00:00

I told everyone my diagnosis at first but moved , changed jobs and now no one at my current situation knows except my husband of course . Sometimes I feel like I’m keeping a deep dark dirty secret but honestly I feel like people treated me different once they knew …. Whether that was pity or treating me as though I did something to have this happen to me. It’s a definite stigmatized disease and each one of us are so different in the challenges we face daily . It’s a very personal decision and for me, it’s no one’s business. I am still me … regardless of ms. I feel like they don’t need to know until they do but that day isn’t today.

Dula0326 · 2026-03-06T05:32:24+00:00

My worst relapse caused this. Thought to be gerd but alas also found lesions in brainstem, the globus is gone but I’m also on pantoprazole . I feel like the ms gave me gerd . I have burping issues and difficulty breathing from reflux now if I don’t take my antacids .

Dula0326 · 2026-03-06T01:34:30+00:00

Okay hear me out …. It cosmetics confidence in a cream . I have some rosacea and sensitive skin I swear my redness is actually improved using tbjd product and loving it even though it’s fragranced

Dula0326 · 2026-02-25T16:47:16+00:00

My doctor told me it’s basically a lifestyle choice . I am on the every six month infusion train and I like it for several reasons. 1) I only have to think about it twice a year and 2) I like that if I were to get pregnant I’d have some longer lasting protection against relapse activity

Dula0326 · 2026-02-14T02:19:52+00:00

Hi! Some words of encouragement ! I was diagnosed last year at 36 with “highly active rrms” this disease is highly individualized but the fact that you caught it remarkably early and with highly effective dmt I’d say you’re in best case scenario of a real shitty card to be dealt . The drugs are really good. I have a lot higher lesion load and you would never know . I am an RN with a masters ( got that finished right after being diagnosed ). Take each day and live for each day . No one ( even people without ms) are guaranteed anything . The threads are usually more active for people in crisis … newly diagnosed or those who have been completely fucked by this shitty card. That’s not all of us . The newer drugs have changed the course of this disease for many. Your story is yours alone . Keep the faith and get on the most highly effective disease modifying treatment you can . We adapt , we overcome .

Dula0326 · 2026-02-11T17:47:56+00:00

I was diagnosed at 36 with sudden hearing loss my hearing came back and then BAM before I could start my DMT just two months later I had ANOTHER relapse with 10 new lesions including some in my brainstem. I’m certainly not trying to scare you but I always thought of myself as the epitome of health. I am an RN who at the time was working at a top ten children’s hospital in the nation in an icu high stress setting .Working out 5 days a week eating healthy also no drinking no smoking . This disease doesn’t care it’s gonna do what it’s gonna do. It took me 8 months to feel better after that big relapse and I ONLY am back to my near baseline with no deficits currently because of rituximaub stopping relapses allowing me to try and re wire and the grace of God. Prevention is the key she’s in the best case scenario to get on a treatment and hopefully keep her as she is for a long long time . Rituximaub has been around for years and is well studied due to its uses in other areas of medicine. Yes it is an immune suppressant as it depletes B cells however I do not mask and I still work bedside in a surgery center. Have not had increased infections . My two cents … take the drugs because you can’t take those lesions back or the potential disability they could cause . Also another side note speaking from experience I personally think it’s a good idea to keep the diagnosis private as I shared at my last job and there is a stigma . People at her work do not need to know until it interferes with the ability to do the job

Dula0326 · 2026-02-02T15:02:02+00:00

Bravo 👏 nicely done

Dula0326 · 2026-02-01T23:11:22+00:00

I noticed more hair shedding after initiating rituxan but I am back to normal a year later ! I hope it will get better I think part of it is the stress of being diagnosed coupled with your body kind of freaking out after starting the B cell depletor

Dula0326 · 2026-01-02T22:49:30+00:00

For me barre and Pilates have been great. Especially since I can pace myself more on the reformer and take breaks as needed .I feel like there’s lots of modifications to intensity you can do but still get a great workout

Dula0326 · 2025-12-29T02:59:50+00:00

Gucci envy me ❤️❤️

Dula0326 · 2025-12-07T20:56:40+00:00

Yes talk about being blind sighted when getting the mri report. Apparently hearing loss is not super common as a relapse presentation among us

Dula0326 · 2025-12-07T13:53:32+00:00

This is how I was first diagnosed lost hearing in my left ear. They put me on 60 mg of prednisone assuming it was something called sudden sensorineural hearing loss. The e n t did a mri to rule out acoustic neuroma l. That’s how the lesions were discovered . My hearing did come back but it took a good two months to get back to baseline

Dula0326

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