multiple symptoms

[mel19701960]

I have extreme muscle weakness, lesions on white matter of brain (neuro specializing in MS said they were not "active" and were so spread out that if they were MS lesions, it is very early and not what is causing my symptoms. He has ordered additional lab work, include an ACE Level that was elevated. His opinion is "watchful waiting" for up to a year with repeated MRI scans to get a definitive diagnosis. What is your input?

[jujuminx]

MRI of what exactly?  Brain, c spine, t spine? How long have you had symptoms?  Any other symtoms other than muscle weakness?  

Julie

[COBOB]

I had Optic Neuritis with an abnormal VEP and one white matter lesion.  I did the 6 month "watchful waiting" with an MS Neuro.  4 months into it I developed Trigeminal Neuralgia.  MRI 2 months later showed additional white matter lesions.  

He called me in for a discussion about whether we wanted to to do another 6 month watch and wait.  I asked about my vision and the risks associated with additional damage to the optic nerves and would he risk his vision on an additional 6 month watch and wait.  

He said he would feel comfortable diagnosing RRMS and starting a DMD.  I told him I wanted to speak with my partner before committing to a treatment plan.  He said he understood and would expect a call from me in the next couple of days,  

I need to go in for another MRI at 6 months after diagnosis (5/2011).  I've had another exacerbation so I'm pretty sure it is RRMS and things will switch into a maintenance mode.

Watchful waiting can have a place, but the data that comes out of it is so you and your doctor can come to an understanding of your diagnosis and  treatment plan. Keep in mind, that it is your skin in the game, not the doctors.  You must always be your own advocate first.

Bob

[Lulu54]

Hi,the watchful waiting is a very difficult thing to do - but unfortunately this is a diagnosis of exclusion and often takes a long while to determine.  I will hope you don't have MS, but while you wait I hope you will stick around here and learn more about this disease.

be well, Lulu