Second opinion...

[jane434]

Hello,
Can anyone recommend a MS specialist in the San Francisco area?
I got a list from the MS association, but I'd like to hear from anyone who's found a MS specialist they liked in the San Francisco area with a lot of experience? I'm nervous about just picking someone randomly and going to them...

Also, how do I go into a "new" neurologist for 2nd opinion, what do I tell them/or not tell them?
Do I bring in my MRI'S right away for them to be looked at?
Do I tell them who my first Neurologist is (my current Neuro doesn't think I have MS)?
I hope my Neuro is right, but my symptoms persist (2.5 months) and I feel unsettled...
Thanks!

[HVAC]

When I went to new Neurologists I took all the tests and notes from the other Doctors and said nothing. I let the new Doctors come to their own conclusion. I generally let Neurologists do their thing then when they ask if I have questions I speak briefly and with out emotion. Writing down questions ahead of time is good. A one page time line of symptoms is helpful. You can see the health pages at the top right. Taking someone such as a spouse can be good. Sometimes it is hard to really hear what a doctor is telling you, because of the anxiety. I have often misunderstood.

The way the MS diagnosis goes is it is first of a diagnosis of exclusion of all other possibilities. It follows the McDonald Criteria also explained in the Health Pages. It is strange because a Neurologist says you don't have it until all the evidence says you do. I was told I could not have anything but MS by a half a dozen Doctors for two years and all the tests pointed to MS. The last Doctor wrote I definitely did not have MS and six months later said I definitely did. It can take years for most folks.

The usual process is MRIs every six months to year to look for changes. Also other tests such as blood work to rule out other diseases and other tests.

It can seem no one cares or is taking you seriously or is saying it is in your head.

There are other possibilities than MS. Not everyone who starts the journey has MS.

Good luck,
Alex

[COBOB]

For a 2nd opinion, that is true.  I changed doctors and just called up the University of Colorado Med Center and told them I had my records and would like to be seen my an MS Specialist.  They gave me an appointment 2 weeks from when I called.   I had decided I wanted a Dr who was closer and an MS Specialist.

It was a good move on my part.  

Bob

[Guitar_grrrl]

Wiggles is right, you will need a referral, either from your neuro or PCP.  I see an MS specialist there at UCSF, though she is reluctant to call my process MS.  My general neuro says I have MS.

Anyway, she's young, sharp, and on top of her game.  I can send you a message with names of the two I've met.

Good luck,
Lisa

[wiggles94]

Hi Jane434,

When I went to get a 2nd opinion, I had to be referred by another doc.

My first neuro's office faxed all my records to the new neuro.  My 2nd neuro would not even see me without having all that info up front.  This included all the blood work, and test results.  (lumbar puncture results, visual evoked potentials, results of MRI).  I also called any other doc I had seen during rule out process (rheumy) and had those records sent to me.  I carried them with me to the appointment.

I brought along copies of all tests, and office notes as well- just to be safe,  and the MRIs.    I also brought along a list of all my symptoms.  

The more info your neuro has, the less time wasted in trying to figure out what's going on.  Just give him/her  all the info and let  them make sense of it.

Good luck.

[jane434]

Thanks. I'm looking to find out which Neuro (a name) who is worth seeing at this clinic also...?

[COBOB]

There is an MS center with several well respected MS specialists at UCSF.
http://neurology.ucsf.edu/msc/


Bob