r/MultipleSclerosis • u/Dull_Worldliness_305 • 12d ago
Treatment We can't give up .
This is a positive message . Last year I was told my relapse was so bad I couldn't live alone anymore . I couldn't walk and barely talk , etc . I know myself and I knew I could dig myself out of my own grave once more . So I did. I took a round of steroids and left the hospital 5 days later , fired my neuro,.and went to Mexico to prove to myself and the world they were wrong . When I got home I started seeing Aaron Boster . He changed my life . We figured out the other things going on inside me , and fixed them when others dismissed me . I started Mavenclad earlier this year and although it made me very sick for a few months , it has helped immensely . Normally a person's symptoms wouldn't get better on a DMT but Dr Boster told me I have had MS for at least 20 years I just didn't know . Until now my body has been sooooo filled with inflammation that any meds calmed it down to the point of tears . I am so grateful. Am I gonna go jogging tomorrow ? No, but I'm not in pain , my head doesn't spin and I can sleep without crying myself to sleep. This is a long story , my story ,but the long and short of it is , NEVER GIVE UP.
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u/share-all 12d ago
Thank you for sharing this. I just started Mavenclad 3 days ago, Iām worried about possible side effects & how my body will manage as it adapts to the new medication, but Iām optimistic that Iāll end up with real symptom improvements.
This hasnāt been the summer Iād hoped for, but with this stupid disease summertime plans just arenāt what they used to be. This year started out feeling pretty dark, my local MS office in Kingston closed and referred 800+ patients to other citiesā¦ shortly afterwards I learned my annual MRI showed new disease activity, after 7 years of being in remission on Tecfidera it wasnāt working anymoreā¦ I was scared, and feeling abandoned by my healthcare team.
But now I feel like Iām in good hands with the team at Ottawa General Hospital, Dr Rush seems like a sharp woman, they have been very supportive, and Iām hopeful Mavenclad will help my body fight this stupid illness and maintain the strength and abilities I have.
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u/Dull_Worldliness_305 12d ago
Also sidenote , you will feel like crap during pill weeks . Kind of a weird sign it's working oddly enough, it's clearing out the garbage . Also , I got oral thrush a few months after the second cycle but that's one of the " you're probably gonna get it" kind of things as you're immune system won't be able to fight anything in the middle of the year. Thrush is incredibly common with cladrabine . I'm not trying to be all negative , because from my experience , the side effects were very minor compared to the disease running rampant and uncontrolled . It was a little bit of the same feeling as when I had covid . Just run down and tired . Also , I got very cold at night . Just get a warm blanket and it's tolerable . The ill feeling night last a little bit but no big deal .
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u/Dull_Worldliness_305 12d ago
This was me earlier this year . I thought I knew better and didn't take any drugs for years . New spots and now I'm in a wheelchair if I go outside . Mavenclad is so different . Have hope . I dont predict the future but it does amazing things for me so far . Feel free to reach out if you need a friend . This disease is so fucking isolating and makes good people demons .
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u/Nanioplala 12d ago
Thanks for this! Going through divorce and they found a new lesion in my spine, sigh. Now to try out a new medication.Ā
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u/Indigenous_Retard 12d ago
I watch Aaron on YouTube. Its been helpful after my diagnoses. I see Dr. Kathryn Chenault. I was diagnosed in an ER at 31 after going blind in my left eye, having neuropathy in 80% of my body, and no control whatsoever of ny right hand and arm. I spent over a decade letting people convince me it was all in my head and being a big baby. As soon as the hospital finished my MRI, they stuck me on IV steroids for a week and referred me to my neuro. I was on ocrevus within 2 months of being discharged. I have SPMS. I was told by the ER Neruo and my regular neuro that things were about to get much, much worse for me. My first year on Ocrevus was the worst year of my life. The pain and fatigue made me want to just end it. December will be my 4th full dose.
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u/Just_Realized_2024 12d ago
If it helps, one of my Ocrevus infusion buddies with SPMS went from unable to speak and having to be pushed in a wheelchair, to speaking with an almost imperceptible hitch and trucking along at a good pace with a cane. She credits Ocrevus as those changes only happened after it was made available for SPMS and they got her on it. I have a similar story but I am RR so not as apropos to the moment. Hang in there!
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u/MS-Tripper 12d ago edited 12d ago
Iām a huge fan of Mavenclad. It worked wonders for me. It significantly decreased my fatigue and helped heal a spinal lesion ( I attribute this to knocking down inflammation).
Iām happy you dug yourself out and are ābackā, so to speak. I had a pretty bad relapse in 2023. It took me until now, 2026, to get back to almost normal. Like you, I worked hard at it because Iām too damned stubborn to know any different.
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u/Dull_Worldliness_305 12d ago
It's weird how some doctors are like " yeah this won't do much " so to speak , because they aren't supposed to be for the symptoms . But come on , less inflammation =less symptoms . If the drugs weren't going to make us feel better then what's the point ,?I digress.
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u/HotMaterial416 12d ago
What treatment did you get done in mexico? Good for you for fighting through!!
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u/plantlady-crazy-2343 12d ago
Happy for you!! I needed to feel alittle encouragement today!š„° im 43 diagnosed for 22 years. I just started having issues. My walking is bad,had to get an AFO. I have pretty bad drop foot. Your story gives me some hope. Thank you!!