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
primary progressive ms
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.
- lyndacarol
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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."
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."
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
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
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