@okmser

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okmser

I have MS and am fine

Hey, ive not posted on here for a few years, only really used this site when I was initially diagnosed back in 2016. However its lockdown, im bored and i saw a few posts on reddit recently about people fighting battles everyday with auto immune diseases that are invisible. What I noticed is that you rarely hear about anyone with an autoimmune disease that is fine. Well im here to say that is me. I am absolutely fine, and probably fitter than I've ever been in my life (32m).I've had lemtrada treatment and no issues for 4 years. So for anyone who might be recently diagnosed i hope this helps to see. I know I must be incredibly lucky with how ive responded to treatment. When i was diagnosed i had foot drop, went deaf in one ear, couldnt take in any information properly/quickly, arm weakness. But all that went not long after steroids. No problems MS wise, treatment works. Dont get me wrong, im goin bat shit crazy thanks to Covid lockdowns but who isn't? :p I hope this can bring some positivity to someone who might perhaps be going through a much harder time with recent diagnosis or just to anyone else who could be arsed reading this :) (I made a new profile as a noticed my last profile had my full name in profile name that I didn't want showing permanently, so sorry if seeing this twice)

Vixen

@Vixen

Hello @okmser, thanks for the positive spin, always welcome! Great that your health has been steady. Yes, Covid has prevented the MS community and others with a whole new raft of issues, such as boredom as you've experienced too. Shift has recently changed format so probably looks a bit different to the one you left behind....

AmyX

@AmyX

@okmser Thanks for posting this, its really really good/encouraging to see :) I was only diagnosed in September and thought at first that the outlook with the disease was almost hopeless and that I might worsen very fast. With the help of family I will be getting HSCT in Mexico very soon. My neurologist says Lemtrada is not available at the moment as it's deemed too risky due to covid! Hope my story can be the same as yours in 4 years time! I really hope the more effective options (inc. HSCT) become an option for more people earlier on over the next couple of years too

ItsMewithMS

@ItsMewithMS

For at least the first 10 years after diagnosis (2005-2015) I felt that the diagnosis of MS affected my life a lot more than the disease itself...it impacted my self confidence, my plans for the future, it would impact my insurability, etc. but beside an occasional relapse impacting my balance, my gait or my speech I was fine! I was on a DMT and steroids handled the occasional relapse...but over time that changed. It is a progressive disease and while we attempt to prevent progression through all means at our disposal we have to stay on villigant as it is progressive and always pushing on us. I worry for those that say "I am fine...I don't need to do anything about MS today" and it sounds like you are on a DMT so that is good, you must realize the importance of it...but at 4 years in I was doing great...now at 15 years in and 55yrs I am doing pretty well. Balance sucks so I don't walk the tight rope at the circus ;-0 and if walking long distances I take a walking stick with me...but, yes, with treatments where they are we are changing the EHSS curve and doing more than "they" thought possible, more than could be done in the past - and will continue to ;-)