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 šŸ’­
Greensboro, NC
November 5, 2017
 · 
Reactions
A MyMSTeam Member

I forgot to mention that My first neurologist also prescribed Amprya for me before he left. It didn't do anything for me either. I guess that's the reason my son continue to say, "Mom, be realistic, don't get your hopes up."

Sometimes I wonder, do I have MS or do I have something that's mimicking the disease šŸ¤— So far, hasn't anything worked for me

I'm praying šŸ™šŸ½ for good results with Rituxan

November 8, 2017
A MyMSTeam Member

Again, thanks @A MyMSTeam Member. I'm showing my son, who's my primary caregiver, your post. He told me to not to get my hopes up because I have been disappointed before. But, I'm praying things will go well. Take care and I'll post my journey on MyMSTeam.

November 5, 2017
A MyMSTeam Member

I don’t mind at all :)
I was diagnosed in May 2016 (yet symptoms started about one year before) with RRMS. I started Copaxone but I never actually ā€œremittedā€ and things actually kept getting worse. There were a few new lesions on my MRI in January, too. As far as mobility, my balance was still was off, I still couldn’t stand on one foot (left side) for even two seconds, and my left foot was still ā€œslappingā€ when walking. Anything long distance was still a lot of burning, tingling, numbness, with the ā€œjello-like feelingā€ that my legs could cave any second.
I saw a new neuro who suggested Rituxan, which gave me the ability to still stay on Copaxone since Rituxan isn’t ā€œapproved for MSā€.
With Rituxan, ALL my symptoms got better (not gone, but sooooo much better and I feel alive again). I know PPMS deals mostly with mobility issues, but it really did help all of my issues. For mobility, I just timed it right now and got to 15 seconds standing on my left foot :) Walking has been better as far as some of the sensations being less. They still come and go, but it’s not what it was. The foot still ā€œslapsā€ but not as heavy. Obviously the existing lesions caused some damage, so I didn’t expect that everything would go away. Hopefully no new lesions have formed but I’ll be having that MRI in January. I’ve tried Baclofen, Gabapentin, and Cymbalta, but they oddly made me feel more stiff! I sometimes take lortab and that helps me move like nothing else. It doesn’t make me feel ā€œhighā€ or loopy or tired. There’s no change in my personality, it just makes my body feel normal. My daughter actually told me to slow down a few weeks ago as we were walking through the store. I can’t tell you how big of a smile that put on my face and how hearing those words almost made me cry (happy tears!).
It helped other issues, too. I don’t want to jinx it, but my bowel issues have decreased to almost not at all. I take Adderall for fatigue which has worked great. Mental clarity finally came about, too.

November 5, 2017
A MyMSTeam Member

Thanks @OneSrepAtAtime. If you don't mind me asking, how was your mobility before your infusion? I have progressive MS. I'm not on any medication. This is the first medication since taken "muscle relaxer" 4 or 5 years ago. The only problem I have is stiffness over my body.

November 5, 2017
A MyMSTeam Member

I had my first two rounds in April and I go this week for the next round. For me it was a lifesaver. The first infusion didn’t affect me but the second I felt a lil yucky a day or two later - not unable to function or ā€œsickā€, just kind of achy. It took about a month to start feeling like it was actually doing something, but from there on out I can’t stress enough how much it has worked for me and helped. Good luck and I certainly hope the same results for you :)

November 5, 2017

Related Questions

View All
A MyMSTeam Member asked a question šŸ’­
Bardstown, KY