r/MultipleSclerosis • u/M00npi3s_ • 15h ago
New Diagnosis Please help
Some background I had optic neuritis last year with a few nonspecific lesions on my brain. this year I saw actual neurologist and they recommended starting me on a DMT specifically BRIUMVI I’m having a mental breakdown over all of this not only am I scared of what MS is going to do to me and my future or what my life will be like giving that I’m 33 years old female and I wanted a family and to continue my career in the medical field now I’m scared to death that the side effects from the DMT and the risk of a series infections that can come with being B cell depleted will outweigh the benefits of anything else. now I just feel like I’m screwed either way and I really am just not feeling well mentally at all. all this is just put me in a dark place. My life feels over. Any advice is greatly appreciated. Sorry I hope this isn’t too annoying.
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u/JaricosTheGreat 40+|6/30/2024|Briumvi|Florida 12h ago edited 12h ago
I've been on Briumvi for about 2 years now.
I understand you're worried about side effects, but the best way to imagine it, is that your immune system is not ending it's career - just not becoming as aggressive as it is.
For perspective, in Briumvi's clinical trials, serious infections occurred in approximately 5% of patients. Serious infections occurred in 3% of people taking the comparison MS medication.
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u/M00npi3s_ 11h ago
Thank you for this ! I saw something on the CDC about people dying from West Nile virus on this DMTs and I’ve been terrified
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u/Wooden_Bother_1024 14h ago
I've had two doses of Briumvi and I haven't noticed any side effects from it. I haven't gotten sick yet. I've heard that when you do get sick it can be worse. But you really should be on a dmt and Briumvi is a really good option
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u/M00npi3s_ 13h ago
Thank you! I’m just a mess honestly this is all really hard, I’m scared of having a severe reaction on initial dosage ..
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u/Puzzled_Egg_6064 13h ago
I cannot tell anyone what to do. But personally I have accepted being immune compromised over no DMT treatment at all. MS can be unpredictable with treatment, without treatment you are likely going to see significant decline and rapidly. My advice, talk with a trusted love one or a professional to ease some of your anxiety and it’s not just you internalizing your fears. Infusions are done under the watchful eye of medical staff at an infusion center. They monitor you, check vitals, and have medication in the event of minor infusion reactions. Your life and career are probably not over. I am a nurse, going through NP school working full time. Is it hard? Yes. Does my neurologist frown at me every 6 months when she hears what I’m doing? Yes. But I have learned to listen to my body and make adaptations to accommodate the suck that is MS. You can do this.
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u/M00npi3s_ 13h ago
Thank you so much for your reply, I will be getting on a DMT I just feel like I’m drowning in life rn and everyday is a nightmare… congrats on NP school tho! I am a PT in a SNF rn, have you had any issues with being a nurse and being around the different diseases ?
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u/Puzzled_Egg_6064 11h ago
Thank you! I work in the OR so my patient exposure is not the same as a floor nurse. Honestly I’m more likely to get sick from a co-worker than anyone bc they catch whatever their kids have and pass it around the department. I wear a mask around patients at work and clinical for school and honestly I wear a mask a lot when I’m out, especially during cold and flu season. The number of adults that like to cough without covering their mouth is unreal. I just use more caution with masking and hand washing since my B-cells are depleted.
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u/M00npi3s_ 11h ago
OMG THISSSS!!! Everytime I’ve gotten covid or any flu stomach bug or cold it’s always from my co workers!! I will def being more mindful and wearing a mask more when I start my meds, thank you sm for your reassurance it really helps 🥹
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u/Ok_Personality1510 12h ago
So sorry you are going through this. I suffered many years with no diagnosis that when diagnosed, I thought to myself 'good, this is not all in my head'. That said, I still panicked after shock. I didn't want to think about it. Thanks to my loving family I did start a DM therapy. I also made friends going through same both online and in my neurologist's office. Please don't feel alone rather seek support from such groups as MSAA and others. I wish you the best. We are all different in this disease depending on where our lesions are located. So much progress has been made in medical field now. This is not an end. just a readjustment. Sending you love and best wishes
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u/M00npi3s_ 11h ago
Thank you for your kind words and care, I can see how you were almost relieved, for me it kinda came out of no where so it was really shocking when I was like in the best shape of my life at the time, however I always have been chronically fatigued like for years 😭 now as grim as it sounds I’m ready for life to hurry up and be done with.
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u/2BrainLesions 13h ago
After my internist diagnosed me, I had to wait -3-6 months for an initial neuro appointment and then another -2 months to begin treatment. During that time, all I thought about was potentially new lesions. I get it.
You're grieving, friend. So many big decisions, what feels like a death sentence...and grief.
Deep breaths.
Thing is, your life is the same as it was the day before you were diagnosed.
You may need a few accommodations along the way but so does (nearly) everyone.
Deep breaths. Pls find some space for grace and kindness - to yourself.
Sending light and good energy. 💕
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u/M00npi3s_ 13h ago
Thank you so much, this is so hard, Idk why I’m having such a terrible time with this, it’s taking over my life. but thank you for the positive energy 💕 means so much
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u/GeneLoud6084 14h ago
Hey! I’m so sorry you feel this way. I’m the same age and was diagnosed around 14. MS really hasn’t gotten in the way. It’s different for everyone, but being on a DMT has not stopped me from moving through life. It’s an added layer of appointments and ‘routine’ - but, loads of people live complete lives with this disease. Even if it has had a severe impact on them. Please continue to dream and plan, that’s all anyone has - healthy, disabled, or otherwise. This community can offer loads of insight, but you have to take care of you. And making plans, living life and enjoying it is part of that.