new treatment

[LakerLi14]

My neurologist has let me know that I have an “aggressive and advanced” MS based on my age (28) and time since diagnosis. (7 months) Steroids were the only treatment to make a difference for me although short term. Next for me is a try with a methylprednisolone 5day infusion. Will be my 4th treatment hoping for a little relief soon.

[lbenmaor]

So Sorry to hear about what's happening to you. Prayers are going out you feel better soon.

Leslie

[AquaZumbaFan]

Whew! Those are some hard words to wrap your head around! My heart goes out to you! Is this neurologist an ms specialist by chance?

[LakerLi14 in reply to AquaZumbaFan]

Switching to a specialist now will actually meet with him next week! Hoping for the best and no time has been wasted.

[AquaZumbaFan in reply to LakerLi14]

Sending only good thoughts your way! Keep us posted how things are going… We are here for you🤗

[CatsandCars]

Hi, LakerLi14. Welcome to the site! This is a warm, supportive group, and I'm glad you found us. I am sorry for the reason, though. My heart really goes out to you, especially since you're so young. But you can learn so much about your condition here, and be as empowered as possible.

AquaZumba fan asked if your neurologist is an MS specialist, and I'm wondering the same thing. When you said steroids were the only treatment to make a difference. Are you on any other meds, like a disease-modifying therapy (DMT)? I ask because if you have aggressive MS, it's really important that you're in good hands (an MS specialist is usually a good sign) and that your doctor starts you on the most highly effective drug that you feel comfortable using. Steroids are great at making symptoms better, but they don't change the overall course of the disease or prevent progression and disability like a DMT. Common highly effective meds to start out with include Kesimpta and Ocrevus, for example. I think it's worth noting that most doctors give a DMT at least six months to work before trying something else, unless you have unpleasant side effects or some other problem.

Are you familiar with Aaron Boster? He's an MS specialist in Columbus, Ohio, who makes wonderful educational YouTube videos for MS patients. I have learned more watching him over the past nine months than I did in the prior 21 years of having MS. He's very caring and has a gift for explaining complex things in a way you can understand. I highly recommend checking out his videos.

Looking forward to hearing more about your situation! 😊

[LakerLi14 in reply to CatsandCars]

I’m switching to a specialist now! I really wish it would’ve been communicated that I’d be better off working with a specialist as not to waste any time. I’ve been on glatiramer acetate and tysabri with no noticeable improvements from either. Thank you I’ll be looking up Mr Boster today!

[CatsandCars in reply to LakerLi14]

My first neurologist was my brother in law, who was great and was not an MS specialist, so sometimes a regular neuro can be very good, but if your MS is that bad, it's probably better to change. Things have changed lately, in that there aren't enough neuros to go around, so you're less likely to get lost in the shuffle and have someone with a lot of experience with an MS specialist. Whoever you wind up with, educate yourself and be prepared to advocate for yourself.

I'm so glad you're checking out Dr. Boster. If you click on his profile pic it allows you to see the videos in order, if you wish, or you can pick the ones that interest you. If you sign up for his newsletter, it tells you when his live streams are, usually a Saturday morning. I think you'll get a kick out of his enthusiasm.

Please come back and let us know how you're doing, ask questions, vent, etc. We're here for you! ❤️

[Biggums]

May your MS slow its progression and this therapy work. Palms up for you.

[Jer29-11]

Hello and welcome to the group. I’m so sorry you’re going through this. I agree with what others have said about ensuring you have an MS specialist and exploring DMT options. Praying you feel better soon 🙏🏻🩷

[ewesttx]

Best of luck with your journey. I hope this next treatment works for you.

[Cwright170994]

That was me back in 2021! I used to only have simple partial seizures, my 1st symptom, which got me referred to a neurologist. I was 19 when that happened, got my clinically definite diagnosis when I was 21 and started on copaxone. That did alright for me until I had the first round of my status epilepticus events. I was 27. It was in April, and I had to spend 27 days in hospital hooked up to methylprednisolone. I got a call from my MS nurse, telling me I have aggressive MS, and I'm to be started on ocrevus when my WBC count was higher.Steroids are SOOOOO good though!

[Robsmom]

Sorry for your diagnosis and I hope the MS specialist gives you more information on how to fight your aggressive MS. It is a fight that we all share, everyone's is different, but still a fight. Praying for you.

[Greentime]

When I was diagnosed at 29, it was hard enough without words like "aggressive" being used. I really feel for you and I hope you get some more positive news from the MS specialist.

[Dean0111]

wishing you the best and keep us updated

[NorasMom]

Not to give false hope if you have Primary Progressive MS, but how did the neurologist reach the conclusion that this is aggressive and advanced after only 7 months? Is it possible that you're still in the midst of an exacerbation, which would explain why the steroids are helping and the other drugs aren't? Please keep the appointment with the specialist and let us know what he says.

[LakerLi14 in reply to NorasMom]

I guess based off the number of lesions seen on my MRIs. It was described as a innumerable amount in my brain, spinal cord and thoracic spine

[Frances_B]

I agree with NorasMom's question of "Is it possible that you're still in the midst of an exacerbation...". Relapses don't necessarily disappear fast just because someone takes some steroids.

If you are still relapsing - has your neuro talked to you about considering plasmapheresis ?

nationalmssociety.org/manag...

[CatsandCars in reply to Frances_B]

That's consistent with my experience, also.

[Kcrist]

that you get some relief with this steroid infusion.

[shamoneldy]

my dr also sent me methylpregnidolone for flare ups but only once then i got on a dmt, i couldnt tolerate that sterioid too much. any others that youve tried that are more tolerable?

[carolek572 CommunityAmbassador]

Welcome to this forum, LakerLi14 . When I was first diagnosed, I was put on Copaxone and monthly steroids. I think that it helped. You can go to mymsaa.org for more resources about how to best manage your ‘ms’. I look forward to hearing more from you. Keep Smiling

[Cutefreckles72]

Hi LakerLi14, Welcome to the group. I am sorry you have “aggressive and advanced” MS. I have PPMS with no relapses at all. Straight to the pain every day. I pray for you and hang in there. 🙏🏾