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Was Lemtrada Worth It?? - Multiple Sclerosis Monday
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- Опубликовано: 17 мар 2019
- Lemtrada has been a very bittersweet experience for me.
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NOTE I am NOT a doctor! I am sharing my experiences with you because having MS can be incredibly overwhelming.
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Thank you for sharing your story!! I hear way more stories like yours vs. them saying it was amazing! Keep us posted!!
So glad to see ya back.
I totally understand what you are saying about Lemtrada because I am in the same position as you are in right now! I finished round 2 and my MRI has no new active lesions but...it is hard to just function in life every day! It is hard as hell! I am exhaughsted!! Every...single...day!
I hope you get feel better soon. I’m tire of being tire too. I know how you feel. Hang in there.
Dr. Terry Wahls was dependent on a tilt-recline wheelchair for four
years until she reclaimed her health using a diet and lifestyle program
she designed specifically to -she now pedals her bike to work each day
It's always good to see your videos and follow your thought processes. Hang in !
I say the same thing about my bloodwork. I might have MS & feel like shit everyday, but I’m healthy 😂
Thank you for sharing your thoughts on Lemtrada. Well I never thought about taking Lemtrada. I had Chemo when I was 20 and I don't want to make this experience gain never again in my whole life!!!!
I am getting ivsteroids every three months now, three days with 1000 mg each day. It helps me walk and talk better. My speaking is terrible at times. But with the steroids I am better.
Hope you will find your way to improve and stay stable. I know that being weak and tired and exhausted with having a family and kids who need you is horrible!
Wishing you all the best! Britta
Hey Britta! I have MS too and my name is also Britta, though that was a funny coincidence 😊✌️
@@brittasegerskog hi 🙋🏽♀️ Britta, nice to meet you 🥰. I know that the Swedish name is not a very common name but I am proud to wear it. How are you doing? Many greetings from Germany 🇩🇪, sincerely Britta 🥰☀️😘🌻
@@brittaroth3780 I live in Mexico and here it is extremely uncommon but my grandmother was Swedish and my mother Danish 😊. I’m good I was just diagnosed in March and they want to start me on Lemtrada in a few weeks. What DMT did you end up choosing?
@@brittasegerskog I was on Tysabri for 4 years and then my JCV titer got too high and I had to stop taking Tysabri. Since then I am on no DMT. Had iVSteroids regularly but since Covid-19 😷 the time between the courses got much longer. I recently had two mri and there are three new active lesions in the imaging. I am seeing my neurologist beginning of August to talk about the treatment options.
Nice to hear from you 😘
Thank you for sharing, Mallery. Do you think that some of the progression could be caused by going off gilenya? We've been getting warnings recently in Australia that there is a correlation between disability progression and relapse in the months after stopping it. That as well as the Lemtrada causing people to hasten their progression at times seems like it may have been an awful mix for you. :( It is my hope that you will balance out soon and find ways to support yourself and cope comfortably with where you're at. It's a shame that the 'no new lesions' good news isn't as important when you're finding all other areas to be so taxing. xx
I guess you never know, right?
Thank you
real story and emotion
I agree! She really puts it out there
Hey Mallery. Thanks for updating us. I have a question- you getting your gallbladder removed was due to Lemtrada? Or other reasons?
I developed acute acalculous cholecystitis after Lemtrada; it's a side effect that wasn't advertised until about the time I got it. I have a few videos about it if you're interested.
I got a hida scan Friday. Hoping to get answers soon. I watched those videos. I’m sorry you’ve been in such discomfort. It’s helpful so thank you for sharing/posting.
It’s not helpful that your in discomfort lol let me rephrase that. Your videos are helpful. Thank you.
Fingers crossed you get your results back soon! I can't say being without a gallbladder has been a walk in the park, but at least I don't feel like I'm in labor. Ha! My husband's scan was abnormal but his pain is so sporadic and less severe that he chose to keep it. I honestly can't remember the last time he complained about it.
I got my results today. I only have 11% function of my gallbladder. I have to see a surgeon. I’m so glad I finally got answers the question is if I’ll be getting it removed or not. How’s living without a gallbladder if you don’t mind me asking. Do you have a video about it? Sorry to hear about your husband, does he have a specula diet or he just deals with the discomfort?
Like video
InshALLAH you get better i pray you get good soon AMEN