Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyMSTeam Member asked a question 💭
Wahiawa, HI

My dr was trying to change me to vumerity I said no I need to look into it first stayed up late researching it prayed for answers fell asleep and dreamed of the last 25 yrs of my life
You know they say your life flashes before your eyes before you die
So yeah I took that as a no don’t do it

September 12, 2023
 · 
Reactions
A MyMSTeam Member

AmyDrummondo it sounds to me like you may want to look into the possibility of switching Nuroligist’s. Each time my Nuroligist has talked with me about switching my MS medication we discussed the drugs side effects, it’s risks of PML (a few years ago I tested JC positive), and the reasons for switching my medication. I really got lucky witch my VA Nuroligist he has run an MS clinic in Seattle WA, was head of medicine at the Cheyenne VA, and most importantly he genuinely cares about me and my well-being. He has called me as late as 9:30 pm to warn me of a low sodium issue, prior to a trip I was taking, which he discovered during a routine lab test. He’s now working to get me in to see various doctors (endocrinology and or a nephrologist) in an effort to diagnose the cause of my low sodium issues. He has actually had me admitted me to the Cheyenne VA hospital once because I was extremely sickly looking, had lost 30% of my body weight, and was doubled over in abdominal pain during one of my scheduled visits. Turned out he saved my life, I had a bleeding ulcer, was very anemic something like a 7 when you’re supposed to be between 11 and 14. The bleeding ulcer allowed my stomach acid to seep out and eat a hole into my pancreas giving me pancreatitis. I’ll never forget what he said to me. “I don’t know what’s wrong with you and I’m not the kind of doctor that can figure this out but I’m admitting you to the hospital immediately so they can figure it out.” He has set my expectations on what and how a doctor should be.

September 14, 2023
A MyMSTeam Member

I’m gonna stay where I’m at for now 6 months to ponder on switching if anything but it will be my choice not somebody else’s

September 13, 2023
A MyMSTeam Member

@A MyMSTeam Member, if what you're on is working then I don't know why they would want to change it.

September 12, 2023
A MyMSTeam Member

My neuro has always been great about giving me options, and ultimately letting me make the decisions. He will give me his opinion, but makes sure I have all of the info to make an informed decision.

September 13, 2023
A MyMSTeam Member

Makes you wonder why he wanted to switch you. Most go by the philosophy, if its not broke, don't try to fix it.

September 12, 2023

Related Questions

View All
A MyMSTeam Member asked a question 💭
Arlington, TN

A MyMSTeam Member asked a question 💭
Catherdral City