My 2nd Opinion Appt at UCLA

[samandsprout]

Hi, all.  I just wanted to give an update on my second opinion appointment with an MS neurologist at UCLA.

My background: I have had mostly mild sensory symptoms and a handful of other possible symptoms but ones that could be attributed to other causes (ex. incontinence issues could be due to delivering my 9 1/2 pound baby).  I have multiple family members with MS, which led my first GP to order a brain MRI (at the time to rule out MS), beginning my journey through limboland.  My MRI was abnormal with several lesions but atypical for MS.  I had a negative VEP, negative LP, many blood tests to rule out mimics, all normal.  I have had 2 repeat brain MRIs and a c-spine MRI.  The repeat brain MRIs were mostly stable with two lesions "possibly" looking larger.  C-spine was normal.  Neuro's position was that without more symptoms, we will just use the wait-and-see approach.  I wasn't satisfied with this, and he referred me for a 2nd opinion.

I was very happy with the nuero I saw at UCLA.  She asked me a lot of questions and listened to what I had to say.  She performed her exam and still didn't find any abnormalities.  However, when she looked at my 3 MRIs, she had a different opinion than my neuro...she did think she saw some changes over time, and even thought there were more lesions, whereas the radiology reports and my doctor thought things were more stable.  

Given my family history, she is willing to take a more aggressive approach.   She said that given my sensory symptoms and the MRI results, I would qualify as having Clinically Isolated Syndrome AND that I could go on one of the DMDs.  Wow!  I know I have read that here several times, that the DMDs are approved for CIS, and here it is in practice.  

She has also ordered some more tests for me - a somatosensory evoked potentials and an auditory evoked potentials, a thoracic spine MRI, and a brain MRI with contrast (because in all the 3 MRIs I've had done, I've never had them with contrast, for some unknown reason).  

I also asked her about whether lesions from migraine would cause symptoms, and she said no, in that case we'd have to chalk my symptoms up to stress, result of the migraine itself, etc.  So, I think that answers my earlier post about whether those "other white spots" would be asymptomatic, and apparently the answer is yes.  But in her opinion, migraine is still on the table for me.

So, now I have a decision to make.  The nuero didn't give me a recommendation one way or the other.  She basically said I could go on the drugs for peace of mind.  She is not convinced one way or the other whether I could have MS or not...she'd need a crystal ball for that.  And I realize I need to accept that.  

I think I may wait for the results of these additional tests, and then make my decision.  What would you do?  My symptoms are not debilitating, but something more sinister could be waiting in the wings.  I did get what I wanted from the appointment, though - the ability to do something about it.  So, I am happy about that!

[Lulu54]

Hi SAS,
Six weeks is just enough time to ponder eveyrthing over and over.... good luck with coming up with a decision you are comfortable with.  I am glad you got a neuro to spend time and listen to you and your symptoms.  

If I understand the DMD's correctly, they aren't going to hurt you if you don't really have MS and are only in a position to help if you do.  

stay in touch,
Lulu

[samandsprout]

Thank you!  

And thanks for asking how I am feeling.  You know, I am feeling OK about it.  I have been kind of dealing with this for 6 years now, and it finally feels like progress.  Would it have felt better for her to have said no way this looks like MS?  Sure.  But I know with my MRI results the only thing that will tell whether this is MS or not is time.  So it feels good knowing that I can start taking a DMD if I want to.  

I will go back and see her in 6 weeks.  I am going to wait and see if the additional tests she ordered can find anything else pointing to MS to further support my decision, and then go from there.  But what I hear you saying is that for an 80%-90% of getting MS, I might be nuts not to go on the meds.

Well, I really appreciate all your help and everyone here.  

[Quixotic1]

Wowee Kazowee!!!  Good Going, Girl!!!

Again, this is what we want to see in our doctors.  She listented TO you, looked AT you and your results and THOUGHT about it with the education she has.  Her comments sound fair.  She can see a subtle increase in severity of your lesions and realizes that your symptoms, though they seem mild, may be the harbinger of a worse disease to come.

And it does seem fair, in the absence of more severe symptoms and appearance of the MRI that she be honest in admitting that she can't be sure of the diagnosis.  But, given that, it is also far more ethical (in my mind) to tell you that there would be a good case to be made for "peace of mind."  Treating a CIS who has at least one MRI lesion on the brain makes sense.  The odds of you having MS are 80 to 90%.  These are pretty persuasive.  The piece of mind is not only hers, but yours, too as long as you realize that there is a chance of this not being MS.  It's called informed consent.  That is why I become so angry at neuros who insist on being 100% sure.  Some of the people they leave untreated will surely have the disease and suffer because of not having meds.

I am so pleased that you went to UCLA and that you found a neurologist that sees the whole picture - not just atypical lesions and fairly mild symptoms.  Congratulations.

Do you think you will continue to see her or go back to the other neuro to follow up on her recommendations?

Congrats again.  How are you feeling about the whole thing?  Doing okay?

Quix