I got the stomach flu the week of Christmas 2023..I had to pull over in the middle of a busy road to vomit..the flu lead to vertigo, double vision annd nystagmus in my right eye. I was taken to urgent care 12/26/23 and couldn’t see a neurologist until March, they ordered a brain MRI where they found lesions. ALL the tests were done and I was formally diagnosed April 2024.
I started Kesimpta in July and am doing better as far as symptoms
I have had my ups and downs. Despite having a wonderful support system, I feel alone.
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Merlin426
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Welcome to this forum, Merlin426 . I am happy that you found us. Kesimpta is a good DMT and I hope that it works for you. There are many here on Kesimpta, and you are not alone. You can visit mymsaa.org for more information related to ‘ms’. I look forward to hearing more from you! In the meantime, Keep Smiling! 🤗
Hi Merlin welcome to our new way of living. It it a challenge but it's doable. Yes in the blink of an eye life as you knew it is over BUT you found us & we will help all we can. We are NOT DRs that being said I think we know more about how it feels to be up that creek than the Drs do. It hits us all differently & there are more DMTs now than when I was diagnosed in March of 1994. I'm glad you found something that seems to be helping you out. I am on Ocrevus going to start my 7th year in Jan. Good luck talk more later Mary
Hi Merlin426, and welcome to our group! Glad you found us. Count yourself very fortunate to have a good support system. That being said, I have always believed that friends and family can be wonderful, caring and compassionate, but only those of us dealing with the crazy roller coaster ride that is M.S., really, truly get what we are going through. M.S. is such difficult journey, and the unpredictable nature of it is so hard to deal with. Please know that you are not alone. We MSers are all here for you. Keep posting and let us know how you're doing. 😊
Welcome, Merlin426! I'm so sorry that you've been through so much. I'm so glad to hear that you're feeling better since starting a disease modifying treatment (DMT). Finding this community is a very good start. 😊 I hope you'll post often so that we can get to know you!
My advice would be to check out Dr. Aaron Boster's videos on YouTube . He's a neurologist who runs an MS clinic in Columbus, OH. He's very passionate about educating MS patients so that we can take good care of ourselves, and learn to better talk to our doctors and advocate for ourselves.
Welcome, Merlin426 , to our crazy world! 😁 that's really scary, having vertigo, double vision AND nystagmus as you're driving! The only one I've had from that list is the vertigo. Try walking along a main road to get to your GPs with vertigo 🫣 even walking to a train station to get a train to the town your neurologist's hospital it's in 😬 I completely understand the distress vertigo causes.Kesimpta is a good one for your 1st DMT! I got started on copaxone, and 5ish years later I had a defining new symptom that showed there was still lesions being formed. I got put on ocrevus, and it's the best one for me in my opinion 😁 I'm a RRMS patient, and I'm trying to convince myself I've not advanced onto SPMS. Kinda working, but there's always a very small feeling nestled somewhere in the horror of my brain.
If you want to keep track of how many lesions you have, you could possibly contact the patient advice liason services of the hospital/it's Trust, and ask for a copy of your MRI and medical notes. I don't know how the US works, but it's definitely the service I use for the NHS.
Greetings Merlin426. The good thing is you're not alone. This forum can give you support. You know what you're dealing with. This is the beginning of your battle. Hopefully you will have more good days than bad days. Each day is it's own challenge. Each day it's own victory. Keep moving. Stay MS Strong.
I am taking Kesimpta as well. I have been on it for 3.5 years.
I was diagnosed in the ER after some sudden symptoms, so I understand the shock of getting the unexpected diagnosis. It takes a while to process everything that comes with it! My emotions were a rollercoaster for quite a while - some days I was a mess and other days were fine.
Finding this group definitely helped me adjust! The support system here is great! It's nice to have people who just "get it" without judgment. I hope you find us just as welcoming & helpful!
Welcome Merlin426! I was diagnosed suddenly in April of 1985. There weren't any DMTs back then, but I started exercising and I am doing quite well. In case you weren't told, exercise is super important. 🤗
I’m sorry you aren’t alone . That’s why we all are here . Our lived changed in the blink of an eye . Yes it started in my right eye . And the hospital told me it was in my head . Nothings there , a month later got diagnosed rrms . I used to be super hyperactive now a slugg. Here take our hand don’t be fearful. We are all in this together. Knowledge is power
Hello and welcome to the group! I’m so sorry for your diagnosis. This is a great place to connect with people going through similar life experiences. I too have a great support system, but it is hard for them to understand when they just don’t know. Hang in there!
Welcome!! 🫂🧡I was just diagnosed in February of 2024! This is a great forum, so glad you found it! I agree with checking out Dr. Aarron Boster on YouTube! He is a wealth of information, and an amazing neuro! You are not alone. 🫂
Welcome to this wonderful group Merlin426 , sorry for the reason. This is a wonderful group to ask questions, vent, celebrate, and more. I was diagnosed in 2006 after stress of buying my first home and being on call at the local hospital when part of the phone system went down. In 2008 I filed for disablity because the flu made my symptoms worse that caused me not to be able to do my job anymore. I wish someone would have told me /recommended to get the flu shot as I never had gotten one until it was too late.
Hi @ welcome to this amazing group of friends. We’re all in this together, so don’t feel so alone. I was dx in 1995 were there weren’t any DMT’s available @ the time.I’m still walking @ taking care of myself. 😊 with the help of DMT’s ( currently on vumerity ) Allot of good info said here.
Welcome to the group, sorry for the reason 😕 Hopefully you will find some comfort and a safe place where you know we will get what you are going through. You can do this!
I so know and understand feeling like that. We feel tired, wobbly, etc. and nobody gets it. This is the only place I have where people understand. I'm glad you found us. (Love your kitty, by the way!)
we are a great lot of great people that all have some of the same problems but life does keep on going for we are still the same person as before all of the odd things going on ...we do discuss what is going on with us ,we all have different things that are going on and different amount of years and men and women ...lot don't prefer this kind of a club but it helps all to have someone to talk to about all the weird things that go on from time to time ..some have had it for many years and not have many problems and others that have just got the diagnose of it ...can ask questions or just read along ...none of us are doctors so always remember that when asking it is just what has helped others to cope with living with MS ...i call it a monster that is bothering me but i just feel like i have to keep on keeping on for it will not stop me no matter what ...it will not stop me unless it is making me fall down and i can't get up...hasn't stopped me yet ..yes i have fallen a lot but i do sometimes have to fight hard to get back up but again that is because of all of the weight that i have put on because of not being able to exercise as much as i did before and not working which helped a lot to stay busy ...stay strong for you are still YOU .. love ,giggle and laughter are great medicine to help to cope with it ...be safe ...ask for help if you need it ..hopefully you were able to get a doctor that specialized in MS ...for most other doctors don't know much about it ...take care and stay safe...
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