Hi everyone! I am 23 years old, and a few months ago, I visited a doctor because I had been experiencing headaches. I underwent a head MRI, which revealed approximately 23-28 lesions, with 2 being active. A lumbar puncture confirmed MS. A spine MRI showed 1 lesion (the radiologist identified 2, but the doctor saw only 1).
I haven’t had any relapse in my life (or at least I can’t think of it). After the diagnosis, I experienced tingling sensations multiple times. However, the doctor didn’t classify them as relapses since they didn’t persist uninterrupted for 24 hours and were limited to sensory symptoms rather than motor issues.
The number of lesions scares me and I don’t what the future holds and it’s really hard to live with that thought.
My doctor suggested Gilenya (Fingolimod) as a first choice for DMT, I have been reading about the rebound effect and I was quite worried and asked for a second choice and I was offered Tecfidera (Dimethyl fumarate) as a second choice.
I would like to know your thoughts and experiences with these two options as I need to make a decision.
Thank you!
Hello! I was taking Gilenya for about 7 years. I recently changed it, not because it was causing me any side effects, but because I experienced relapses again. While I was taking it, I was very satisfied. I had no issues and didn’t experience any side effects other than immunosuppression. I don’t know about the second treatment! I hope the one you choose is the best possible for you and suits you well!
Hi there, i cant help you on the two DMTs (im on Avonex) but if its of some reassurance, when i was diagnosed i was told i had a lot of lesions on my brain. Ive never plucked up the courage or sufficient inquisitiveness to ask how many but 17 years later the main impact of MS is that i cant walk for more than 15-20 mins and from time to time i get ‘fatigued’. My annual MRIs havent revealed any new lesions ( although ive never had my spine scanned). So, I suppose I’m trying to say don’t despair - and the more recent DMTs are better than the one I was put on.
I did ask, and the answer came: ‘About as many as you’d expect.’ 
Very useful and informative!
Indeed. But I can take a hint: I never asked again.
Your case is like mine. First scan due to head pains, initial diagnosis RIS. I now have minimal symptoms: just pins and needles (parasthesia). My neuro did class (some of) this as a flare because although it comes and goes, it persisted for a period of months. LP confirmed MS.
But though my symptoms have been mild so far, my brain is a right mess. I was told “at least 30” lesions… they stopped counting! One on cord too.
I’ve had 2 years of stable scans and waiting to hear about the latest. Symptoms also fairly stable. Opted for a high efficacy drug (kesimpta/ofatumumab) for long term benefit. Out of your choice of DMTs I’d just take whichever is more effective.
It does make me wonder how we function with such damaged brains…what did all those bits do?!
I have a nasty feeling that ‘what all those bits do’ might be something to do with the cognitive reserve that is supposed to support a person through healthy aging but that we, alas, burn through decades too early! With that cheerful thought, I’m going off to find myself a nice glass of wine. 
Ha ha. Definitely the best solution.