Acthar & Tumefactive MS Lesion
 

Hi All,

Nice to meet each of you and I'm hoping you can provide me with some feedback.

I have RRMS (diagnosed in 2005) and have been on Copaxone. I have been pretty blessed up until this past Sept 2011 where it appears I developed at tumefactive brain lesion. At the time, my neuro doc just wanted to take a "wait and see" approach and then in Feb 2012 - I had a tonic colonic seizure. Pretty unique for a MS person to have a seizure and it scared the crap out of my husband and kids.

I had my first round of steroids in Feb and then a second (longer) round in May. My recent MRI has shown little affect to the lesion so my NEW nero doc wants to put me on Acthar. My question is, if the first two rounds of "steroids' didn't work - then why would this one?

I can't seem to find many folks with MS who have this type of lesion which is really just defined as a "large" MS lesion so finding the normal course of treatment has been a challenge. We all know that the first line of defense for MS relapes is to treat with steroids....but what if the steroids don't work?

I mean since Acthar is SO expensive, wouldn't something like a plasma exchange be a better solution? I don't want to waste time, money and my cognitive health (seems to be getting worse each day) by not taking the right approach.

Any thoughts, recommendations or suggestions you can share would be appreciated.

-jen

We discussed that here. I hope it helps you.:)

http://neurotalk.psychcentral.com/sh...tive+MS+Lesion

thank you...
 

Thank you and yes, it was helpful.

I don't have anything useful to add, just wanted to say welcome to the community! I hope you stick around, it's a good place! :)

Hi and welcome to NT!

Re: seizures and MS in general, Mayo says that we are 3-6 times more likely to have seizures than those w/o MS.

http://www.mayoclinic.com/health/mul...erosis/AN01811

I haven't any experience w large lesions, so I can't help you there.

ANN

I have seizures do to my MS. I developed them about 10 years ago. They are under control.