Share this:


Posts: 1
Joined: Nov 30, 2011


Posted by @tobey, Nov 30, 2011

I have had MS for 7 years, since I was 19. I graduated from college and played sports while having MS, but in the past 2 years my MS has totally changed my life. I am now in a wheel chair most of the time. I have terrible ataxia which prevents me from doing most anything. And I have sores on my tongue which 4 different doctors cannot figure out what they are. I have been on almost all of the MS drugs with no results. I am currently on Gilenya the newest MS drug which is an oral. I am currently having an episode (I think) as my balance is off again and my memory is terrible. I had three MRI’s last month which still show increased lesions on my brain. I believe I have seen some of the best doctors in the Northwest but am now considering making a trip to Mayo as I am getting despirate. Has anyone had such problems come on so quickly?


Alex Simon

Posts: 179
Joined: Feb 08, 2011
Posted by @alexsimon, Dec 30, 2011

Hello -
I do not have MS, however, if you would like to request an appointment to see one our MS specialists please click on the “Request an Appointment” link at the upper right hand corner of your screen.

Also here are some links to more information:
MS – general:

MS – Expert Answers:

MS- Mayo Specialty MS Group Team:


Posts: 176
Joined: Nov 05, 2011
Posted by @deliasanderson, Jan 7, 2012

interesting article on hughes syndrome and misdiagnosis of ms in the telegraph


Posts: 2
Joined: Aug 30, 2012
Posted by @anon89492559, Aug 30, 2012

Go to Mayo in Rochester. I saw Dr Wineshaker (spelling?) there. My local neurologist trained at that Mayo Clinic, it is the largest, and best facility for MS. After my visit I was even randomly checking searching MS on my iPad and realized the most recent podcast on new research, treatments, and diagnosis featured my Dr at Mayo. Some departments at Mayo require a referral from a Mayo Alumni Dr or a current Dr at Mayo. I had this through my local Dr, so, I don’t know if the neurology Dept and this particular Dr requires this. It took a while for me to get my first appointment, but it was worth the wait. I see you posted this in November. I’m just 27, about your age, and I really hope you can make it up to MN to Mayo. And yes, I’ve heard people who lived with it all their life with little progression, but I also know MS in some people can change dramatically overnight. Best of luck to you. Please let me know if I can offer any suggestions on traveling to Mayo or what to expect in your first appointment.

Please login or register to post a reply.