Multiple Sclerosis (MS) Support Group

This community is a place where members can discuss current events and weigh in on what's going on in the world.

0 Online

stayingpositive2 07/14/2010

Had MRI and many spots on my brain. Did spinal tap came back negative for MS, but given the spots on the MRI DR gave me 50% chance of devolping MS. So he says I have CIS. I have 3 options do nothing, start Copaxone or Rebif or there is the Oracle study going on now I can do. Any advice would be appreciated. I am 31 have 2 kids and want to make sure I am able to do things with them for as long as I can.
Keeping Positive. Thanks everyone!

deleted_user 07/14/2010

Do nothing and follow up with doctor on regular basis for neurological exams. The CRAB drugs delay onset from CIS to MS. However, they don't prevent it. Meanwhile, watch your diet, get enough Vitamin D, and exercise daily (it releases brain growth factors that will protect your nervous system). MS is highly variable there is no way to predict what it may do at this point. Sadly, you could be symptom free the rest of your life - or you could have a relapse. There is no way to predict.

You should find out the number of lesions, their size, and if any of them are gadolinium-enhanced. Gd-enhanced means you have active disease. Hopefully your MRI was performed with and without constrast. You also should have in your possession the CD of the MRI - they should give it to you - no questions asked. The CD can be viewed on any WIndows machine (XP, but not Vista). The viewing sofrware is embedded in the CD.

There are some people with MS who do not have a positive spinal fluid test.

mooseyinn 07/15/2010

WOW! That pretty much covers it! I'll just add.....Maintain a posirive attitude no matter what!

Cheers,
Sharon

mooseyinn 07/15/2010

POSITIVE!

deleted_user 07/15/2010

Your story sounds like mine. Started with Bells Palsy, then an MRI with multiple lesions non-enhanced and no change for 18 months, and a normal LP. My neuro went back and forth and then finally decided I should start a med. I am on Avonex although very tempted to stop as the side effects are kicking my butt.

It is very difficult in our situation to make the medicine decision because the MS, if that is truly what we have, isn't affecting us much so the thought of an intrusive med seems difficult to accept....and we may not even need it.Yet if we do not accept it, we may be asking for trouble down the road.

deleted_user 07/16/2010

I am new to DS but dx'd with MS 19 yrs ago. RRMS that only reared it's ugly head a few times over the years, so I never began meds...I was in total denial. It has come out of remission recently and last week I began Avonex. Now that the denial is passed I am angry as hell! I can't help thinking that my symptoms aren't 'that bad'...why do I need meds now, after all these yrs?! Side effects suck, anxiety all week long...I'm sure this too shall pass but in the mean time, any thoughts?

stayingpositive2 07/16/2010

Also I have 2 children was hoping on trying for another one when this happened but stopped because wasn't sure what was wrong with me. Any thoughts on this subject?

Join the Conversation