Relapsing Remitting MS: Over 100 lesions

My mother has Relapsing Remitting MS and she continues to be told it has not progressed since her diagnosis in 2006, yet we were just told she has over 100 lesions on her brain. Is this possible? Do you know anyone that has this many lesions? How can someone have this many lesions and their MS not progress?

I have tried researching for hours and I am at a loss. Luckily, we are seeing a neurologist at Mayo in August for a second opinion.

Hi @trinitylm, I'm tagging fellow MS members like @beltonite410 @seanmay23. @flowergirl4167. @strongevergreen @nightops who can share their experiences with Relapsing Remitting MS and brain lesions.

You may also be interested in seeing their posts in this related discussion:
- Recently diagnosed with Multiple sclerosis https://connect.mayoclinic.org/discussion/recently-diagnosed-with-multiple-sclerosis/

Trinity, have you and your mom started a list of questions for the neurologist?

I have been fortunate in that my first MRI showed 4 active lesions, and another 9 that had been active over the years, and I exhibited some mild but concerning symptoms - diagnosed in December of 2022, so I’m still new to this world of MS. At my recent 6 month follow up I had 6 new active lesions, but my prior 4 had went inactive, and some of my old symptoms had returned. Basically I have active but mild MS… Did another round of infusions with SoluMedrol, and switched from Copaxone to Tecfidera. I’m not a full month into Tecfidera, and symptoms are starting to improve, but it’s hard to say what my next MRI will show.

Regarding your mom’s lesions, are they T2 enhancing lesions (active) or are they inactive lesions?

My mom has both active and inactive lesions.

Please make sure to research every single thing, even if you trust your Neurologist. Also check for drug interactions before taking any medication prescribed. Doctors are human and make mistakes. I’ve seen a lot of mistakes with my mom the last 17 years and hope others won’t have to go through the same growing pains.

Thank you! Yes, we have started a list. Any question suggestions would be greatly appreciated.

Hello. I have ms and was diagnosed in December 2000. I am 56. Unfortunately, I have an outrageous amount of lesions on my brain. The reports say they are too numerous to count. I don’t think you should worry about how many lesions they say she has and focus on how she is doing. It sounds like she is doing pretty well and that is a wonderful thing. Even with all of my lesions I still do well. I have some trouble with short term recall, i.e., remembering names of movies, movie stars, where are my keys, why did I come in this room, lol, pretty normal stuff. I have a little trouble with the function of my right leg and a little foot drop, some balance issues and some vertigo sometimes. I use a cane for safety and my own sense of independence. I know it’s scary especially since no one knows exactly how things will go for each individual. Is she in a disease modifying treatment?