Second Opinion Advice Please (long)

[rocky282]

Ok, here is the situation... I am on Betaserone currently and I do like the doctor I am working with right now, however... I have had 2 bouts of ON, this year while on the Betaserone, and a large amount of the exhaustion, huge problems with dizzyness and balance, and continued problems walking. My current doctor feels that the Betaserone is doing as well as it can and that I have greatly reduced my attacks (12 or 14 new leasons) from last year and (5 new leasons) the year before. This is the fourth CRAB drug we have tried, I was allergic to the first 3. I am currently diagnosed as RRMS, but if I haven't had a remission. well...

I had my first attack January of 2009 and got diagnosed January 2010 and have yet to get what feels like a period of remission. After seeing an NeuroOpthamologist who said that it does look like to her that my ON keeps going active, but that she would just continue to monitor my condition since my eyesite keeps comeing back.

My insurance Company offered to send me 6-8 hours south to Massachusetts to see one of 3 doctors for a second opinion. The first is Eric C. Klawiter MD and he specializes in ON and MS. The second is Guy J. Buckle MD and he specializes in Womens with MS, and the insurace company also suggested Ellen Lathi MD because she has a lot of experience. They would like me to choose one of the 3 to see. I think I would prefer to see Dr Klawiter because I have had constant problems with ON.

What would you guys do in my situation?

[Toomnyhats]

Second (or third) opinion is never a bad idea. What will happen?

A. The new doc agrees w/current doc & you keep on keepin' on.

B. The new doc disagrees w/current doc & you try something new.

As for which one to see - go with your gut. From what you have said Klawiter sounds like the best for you.

Remember, DMDs do NOT heal this MonSter. Our best hope is slow progression & relapse rate which it sounds like B is doing for you.

[rdmc]

Second opinions are fine, but then you have to decide which opinion do you trust. that's the downside if they disagree.

But you mentioned you hadn't had a relapse and wondered if you thought you might be SPMS...if so, remember, Beta is the only DMD approved for SPMS. doesn't mean you can't get another med, but makes it more difficult once you get the SPMS label.

[Redwings]

Hi rocky:
All three seem to be very well qualified. But if you're having recurrent ON, it makes sense that you should see a neurologist who has experience with, and has stated an interest in, ON. (In my 20 years of dealing with recurrent ON, I've been both amused and horrified by how little my neurologists know or understand about vision, including ON.) In your situation I would see Dr. Klawiter. Dr. Klawiter is also listed on the website of the Guthy-Jackson Charitable Foundation as a clinician who is knowledgeable about neuromyelitis optica. NMO is a consideration with recurrent ON.

[0485c10]

I'm sure you're rather knowledgeable about MS yourself.
I agree the 2nd opinion eye doc is the one that i would select. what are your thoughts inside?

[Bob698]

Be sure to talk to your primary Neuro and tell them what you just told us.
Don't assume the ins. co. will let them know what's going on and that you're doing this more as a consultation.
I agree about going to the ON specialist.

BTW, remember when we first showed up here? My ON in my left eye was pretty bad but it actually started to clear up a bit about three or so years ago. I was used to having a bad eye and having it get a little better was more of a pain in the rear than a blessing.

[rocky282]

My Thoughts

I'm sure you're rather knowledgeable about MS yourself.
I agree the 2nd opinion eye doc is the one that i would select. what are your thoughts inside?

I am really thinking I want to see the doctor who specializes in ON. I have been given the test for NMO twice since all of my leasons and symptomology point to NMO. The test however comes back negative