MS 15 Years On: The Big Question Did My Treatment Truly Work?
2,606
Published 2023-02-13
Multiple Sclerosis Treatment VS no Multiple Sclerosis Treatment...? That's a question a lot of us ask ourselves when we get diagnosed with MS.
But what happens when you're unsure about what to do? Especially when the treatment options come with a multitude of side effects..?
For me the answer was a really easy one because I had several relapses in a very short space of time and with each relapse I was getting more disability issues. I didn't want to think that life was going to potentially carry on like this so I made an informed decision to accept treatment on a blinded trial. At the time I went onto this trial the treatment hadn't been licensed, I knew that it came with a lot of side effects but I was willing to take that risk.
It is of course important to weigh up the pros and cons of any treatment that you go onto, but for me the possibility of a drug halting the profession of my disease was paramount to my decision making.
I'm 14 years down the line from having Campath / Lemtrada and I feel like it's the best decision I've ever made.
* I had been relapse free for 10 years
* My brain and Spinal MRIs have been activity free
* My existing lesions have shrunk
* There are no more new lesions
* There's no more enhanced disability
* I feel better overall
* I hardly ever get any colds / flu! (bonus)
In my mind, the above says it all, and although I did have some side effects from the treatment, to me the pros outweigh the cons.
If I had a chance to do it again I would and I would say to get on a DMD as early as possible.
#multiplesclerosis #disability #msawareness
0:00 Introduction
0:31 It's your choice
0:44 going onto a DMD trial
04:13 what was my treatment
3:24 did it Halt My Progression
6:10 I'm treatment free now
6:31 Life with no treatment?
7:14 would I have treatment again?
8:37 final thoughts on the treatment
All Comments (21)
-
I should have mentioned that in 2008 I had a total number of 20 lesions in both my brain and Spinal chord. My last ever MRI scan taken on Christmas Eve 2021 shows that to date I have 8 lesions in total.
-
Just had my 30 year anniversary of my MS diagnosis. I am 52 years old with an EDSS of 6.5 (bilateral support needed). On Ocrevus (SPMS). I will NEVER stop fighting.
-
Thanks for sharing Laura, it’s good to know you had NO RELAPSES for 10 years, fantastic! I know a lass whose symptoms first appeared in her 20’s (around 2008) but was not properly diagnosed until her walking was badly affected. About 10 years ago she went on to Tysabri but now sadly she is so badly affected by MS she is in a motorised wheelchair and cannot lift her arms to feed herself, needing full time care. Early diagnosis and high quality disease modifying therapy is just so important. I am happy for you.
-
I'm 37 I just got diagnosed with PPMS. They said sorry nothing for you. 😭😭😭Thank you Laura. You're so sweet and kind sharing your story Since birth? I didn't think you were born with ms. It triggers once your immune system is established.
-
Thank you Laura for the video and for being willing to take part in a clinical trial! Because of you and people like you, we now have dozens of MS drugs to choose from. ❤ I love your attitude and your gentle nature.
-
Ty so much for sharing your MS story 🤗 I currently got on Kesimpta my first DMT I was diagnosed at 46. Had symptoms for over 20 years. When they diagnosed me they also found an eight ball size brain tumor. Brain surgery end of 2021. (I always have issues now more since surgery. However I am glad they caught it, or I wouldn't be here today.) Which is a form of MS, tumefactive MS that changes to RRMS. Also Dr. Boster also talks recent video about his view of what you took, and it's primarily his first choice for most, then Ocverus/ Kesimpta, with less progession and Relapses. I am so glad it's worked for you and that your sharing your story! It's important to share because it helps us and helps others. Huge hugs fellow MSer
-
Hi Laura, I was diagnosed in October 2009 and had two major relapses one after another, I initially had treatment for both but have not had any treatment since. It’s amazing people like yourself who give the rest of us hope. I know I’ve had more relapses and flares since but choose not to have the drugs because of the side effects so Thankyou again because it’s made me re-think my options. Lisa 😊
-
Stay strong as you are very strong. You keep going hard 💪
-
Loved this video. Thanks for sharing your story.
-
Hi Laura, Thankyou for sharing your story and the success of the treatment you have been taking!.. You are looking so well! ❤️
-
Hi hope you are doing well ! I am 21 years old and now my mRI scan shown multi sclerosis and I went emergency they gave me steroids I have only numbness of left side body and muscles spasms. Is there is any treatment for this or it has no treatment ?
-
It’s not easy but it’s effective. I was in same trial 2009 at Mt. Sinai NYC.
-
Relapses are not the worst things that MS can bring, Progressive MS is! You are relatively young (it seems to me) and the best outcome is to postope this dreadful event.
-
❤️
-
Talking about my Lemtrada treatment and whether I think it was worth taking the risk..
-
Cool. chuck
-
I was diagnosed 12yrs ago and after 6months they put me on Rebif, the last time I had an Mri which was about 4yrs ago the leasions have spread in my brain and spine, maybe I would have been worse without it? I'm scared to come off it just incase.
-
It starts with gluten , im gluten free now , feeling much better after being sick for nearly 13 years.
-
Hi Laura I am from India past 20 days before rrms diagnosis but both legs more spasticity but no pain
-
I have MS 32 years and i have no idea how many lesions i have. For me they can’t do anything about the lesions so why worry about it.
