primary progressive ms

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

primary progressive ms

Postby sandrab » Fri Feb 04, 2011 7:36 pm

I recently found out I have ppms. I have a million questions. I would appreciate any links or information. One of my questions is: Is it true that there is no treatment for ppms? Then why am I taking Rebif shots 3 times a week? Why am I taking Ampyra twice a day? Should I just stop taking these expensive drugs? I need to go to a new neurologist and get a second opinion. I need to work on exercise and beginer yoga. Any answers or suggestions would be greatly appreciated.
Thank you,
Sandra
User avatar
sandrab
Getting to Know You...
 
Posts: 16
Joined: Tue Feb 01, 2011 4:00 pm
Location: Jacksonville, Fl

Advertisement

Postby Cece » Fri Feb 04, 2011 7:55 pm

Welcome to the forum. I am sorry you have this happening to you. Yes, a second opinion is often a good thing. I am not familiar with Rebif being prescribed for PPMS, but maybe others are. If you care to join us in the CCSVI subforum, I'm a supporter of that as a possible treatment! The Ampyra can help with the walking, even in PPMS - it can improve it a little, while you're taking it.
Cece
Family Elder
 
Posts: 9023
Joined: Mon Jan 04, 2010 4:00 pm

Postby lyndacarol » Sat Feb 05, 2011 9:17 am

Welcome, sandrab. I join Cece in welcoming you and reinforcing with her your own idea that you need to go to a new neurologist and get a second opinion.

Your questions are very good – do you need Rebif and Ampyra? Your situation and treatment need be discussed with the new neurologist.

Again, I agree with you that exercise is very important. I also believe that diet can have a great impact on MS. I encourage you to look in that area; I myself have recent interest and hope in the case of Dr. Terry Wahls – she encourages a special diet (http://www.TerryWahls.org) which seems to have helped her own MS.

This community at ThisIsMS understands much of what you face; ask your questions, please share what you find. We do not have all the answers, but we try to help each other. Welcome to our "club."
User avatar
lyndacarol
Family Elder
 
Posts: 2313
Joined: Thu Dec 22, 2005 4:00 pm

Postby brave » Sat Feb 05, 2011 7:28 pm

welcome Sandrab to TIMS

I have had PPMS for 12+ years and have been on Avonex(5 years),Copaxon (3 years),Rebif (5 months) , Avonex again (1 year) and Tysabri (1 year), . None of them helped to slow down my progress .

I fainted in office while I was on Rebif for 3 months.

Having said that, we know that some might benefit from a medication while others not .

I'm taking Baclofen, LDN and Ampyra now.

wishing you best of luck and hope you'll benefit from Rebif.

brave
User avatar
brave
Family Member
 
Posts: 61
Joined: Tue Feb 24, 2009 4:00 pm


Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service