My husband was misdiagnosed with MS six years ago.  After a massive stroke in November 2008, he was diagnosed with MM and the MS diagnosis was taken away.  He had both sides revasularized, the second one done by Dr. Steinberg in April 2009.  His last checkup in CA was in October 2012 and all was good.  Then the following series of events took place...

June 2013 brain bleed in the basal ganglia...five days in hospital...sent scans to CA and they said all was ok

December 2013...sudden onset of numbness of left thumb...again sent scans to CA...again told all was ok and that if something did happen, give it two weeks for new vessels to grow into the area

Now...bad headaches started about four weeks ago...two weeks ago it was so severe we went to ER...scans showed stenosis of the posterior cerebral artery....sent scans to CA and was told the same thing as last time.  Four days ago he lost some vision in his right eye, where the headache pain was centralized.  He equates it with the dim screen a cell phone has just before it goes dim, plus he has lost all sense of color as well as visual acuity.  Since CA said nothing they could do, we went the opthamolic route and saw the Chicago area specialists at Wheaton Eye Clinic.  First question the doctor had after examining him was, "Have you ever been diagnosed with MS?"  We were stunned to hear that come up and told him about the history of my husband's MM journey. Husband was diagnosed with optic neuritis and was told to see neurologist also.  Before the neurologist would see him in the office, he sent my husband to the ER to get a lumbar puncture and IV infusion of solumedrol (common treatment for MS patients during an exacerbation of MS).

We are now waiting to get an MRI of his optic nerves to see what is going on there.  I have looked online and have only found one instance of someone having MM AND MS. 

I figure we have two possible outcomes during this:
1.  The vision loss is from the MM and he is headed to having that massive stroke.
2.  He actually has BOTH MM and MS.

Since I just spoke with Teresa from Stanford the day I found out about the vision loss, do I call CA back to tell them about the vision loss?  Which is the better of the two scenarios?  We are so lost and uneasy with the idea that we have to wait for a massive stroke or that my husband has MS and all that would entail.  He is out of work right now (trained as a body man before his massive stroke and worked for three years as a teacher of auto body collision repair) and has deficits in his use of right hand, left thumb, short term memory, and executive function.  Scary future.   Any advice on where we go from here?

I'd definitely tell Theresa about the vision problems.  It must be very frustrating and scary to be in this position; to know something is going on, but not "what".  Just keep speaking up though, don't "wait and see".  I hope for the best for you!