Lesions... help

[Jennaly16]

Hello!
I was diagnosed about 10 months ago with MS. I had my first MRI back in March and start Tysabri. I had two lesions when i was diagnosed.
In December i went for another MRI to see how Tysabri has been working. A few days later i was informed i had more lesions but they were not active. Neurologist believes that these lesions formed after the first MRI but before Tysabri was in full affect (so possibly before July). I have to go for another MRI in March.
My question is...... how fast and often do these lesions form? When diagnosed i did not want to do research. I did not want to know what was ahead but rather go day by day until i was ready for all the information. I thought it would take years for lesions to form, not months.

When i went in December i was really hoping they were going to tell me they misdiagnosed me. I never thought it would have gone the other direction.
Any information that can be shared is appreciated as now i feel like a lesion is being formed every second (realistically i know it is not, but now i'm over paranoid).
Experiences?

[IntoDust]

I’ve read some studies that say lesions can appear at 10x the rate of relapses - meaning that for every relapse that causes symptoms, patients can accumulate up to 10 new lesions. This is because most lesions form in “silent” areas of the brain.
These serial MRI’s were done on a patient who was considered stable and relapse free for one year: http://www.msdiscovery.org/news/news...more-meets-eye

I have roughly 17 lesions, but I haven’t had 17 relapses. My first MRI showed 2, then a few months later 15, then a few months later 2 more had appeared. The lesions form fast but only stay active for a few weeks. These all happened before starting a DMD.

[pennstater]

There is no way to predict the frequency of lesions or the duration between forming. Dealing with the unknown is one of the hardest parts of MS.

How have you been feeling? You should get a better readout on Tysabri and it's effectiveness for you based on your March MRI. I hope you have luck with it. I am in my eighth year on it - no new lesions. One shrunk a little, but other than that, no changes. A big win - hope that is your experience.

Interesting enough, there were some studies where they did time lapse MRIs on some patients once a month. They actually found some lesions would disappear. Again, a mystery as to why some stay and some disappear.

Try to relax about the MRI. Easier said than done.

[Myoak]

Hello Jenn,

I believe your neuro is spot on... the lesions probably formed before Tysabri took effect but the good news is they are not active now and very likely, that is due to the effectiveness of Tysabri. So, the choice of meds was a good one. It is definitely my favorite MS DMT and for 3 primary reasons... effectiveness against new MS activity, lack of nasty side effects, and much less fatigue than with other DMTs.

Tysabri increases risk of PML. However, that risk can be mitigated by extending time between doses; studies prove that point. Remember, there is no PML risk when there is no JC virus. The JC virus causes PML. So no JCV = no PML.

Just because someone has JCV doesn't mean they will get PML, all it means is that PML is a possibility if someone is JCV positive. But remember that PML risk can be decreased by 88% by extending time between doses. Many people on Tysabri who are JCV+ go 6,7, or 8 weeks between infusions.

Since there is very, very little risk of PML the first 2 years on Tysabri even if you are JCV+, infusions are usually kept at 2 weeks for maximum benefit against MS.

I trust the feelings of anxiousness will subside as the medicine slows MS activity to NEDA (No Evidence of Disease Activity) as it does for so many, not everyone on Tysabri is free from MS activity, but the large majority taking it do very well.

You have every reason for optimism and the expectation of a normal life if there is such a thing for any of us! Smile and be at peace. Your medicine is working and in the long run you are going to understnad you have made a great choice of DMT.

Allow peace to rule your heart and mind, I believe a peaceful mind helps any medicine to work better. I bet your next MRI in March shows no new activity. Be sure to let us know, won't you?

Also, keep in mind that you are likely to improve on Tysabri. Especially, if you are relatively young or newly diagnosed. That is because your brain gradually performs work-arounds of damaged areas using something neurologists refer to as "reserve capacity".

Best wishes!

[Myoak]

Oh, please excuse the glaring error in my previous post about Tysabri being infused every two weeks; I should have said every 4 weeks. No one gets infusions at 2 week intervals.

Sorry, my bad!

[gargantua]

Hello!
I was diagnosed about 10 months ago with MS. I had my first MRI back in March and start Tysabri. I had two lesions when i was diagnosed.
In December i went for another MRI to see how Tysabri has been working. A few days later i was informed i had more lesions but they were not active. Neurologist believes that these lesions formed after the first MRI but before Tysabri was in full affect (so possibly before July). I have to go for another MRI in March.
My question is...... how fast and often do these lesions form? When diagnosed i did not want to do research. I did not want to know what was ahead but rather go day by day until i was ready for all the information. I thought it would take years for lesions to form, not months.

When i went in December i was really hoping they were going to tell me they misdiagnosed me. I never thought it would have gone the other direction.
Any information that can be shared is appreciated as now i feel like a lesion is being formed every second (realistically i know it is not, but now i'm over paranoid).
Experiences?

Jennaly15, Thank you for posting. Our situations are similar. I had a flare and MRI in Jan 2018 which found disease activity. Went on Tysabri in Aug 2018. I just had follow-up MRI a few days ago, and it - like yours - has a lot of new findings, but it looks like there is no "active" disease. So optimistically, like others on this thread I believe these lesions formed as part of the old relapse - meaning damage from a relapse can show up afterward but that it was part of that flare, overall.

Here is one source that references the concept:
For every clinical attack there are ten or more lesions that can be seen to come and go on MRI.

https://www.raconteur.net/healthcare...hanged-my-life

I hope you can get some additional answers from your doctor.

[Jennaly16]

Thank you all for replying. I have been on Tysabri since May and i go every 4 weeks. I am JC + (which when i started on it i was not). Drs are ok with keeping me at 4 weeks right now and are monitoring the JC value every month. I do get very fatigued the week leading to infusion. Like each day gets harder to get up and out of bed and i just want to nap. However i do work full time and i do have a 2 1/2 year old at home so life is pretty hectic without adding in MS. Overall i'd say i'm pretty positive person when it comes to this "disease" but finding out new lesions occurred was a downer. At least there is reassurance that it happens.

I also appreciate some of the knowledge you shared. As i said, i didn't want to google things as i was worried i wouldn't stay positive. But it's good to hear some facts before totally freaking out.
Please keep me updated with all of your stories as i'm always curious how each of us is doing!