primary progressive ms

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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,
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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.
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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 ( 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."
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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.

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