I Am Back -- remember me?!
 

Hello former Braintalkers and current Neurotalkere!

I see Sally is still here. How about Lady Express? Others?

So, I am in my first major flare in over ten years. My legs are week and feel like they want to cramp. swimming, surfing and standing more than 5 minutes can result in shin cramps (ouch).

Saw doc who took blood and will do MRI. He rx'd Baclofen, Vitamin D, CoEnzymeQ, B12 sublingual, B6, Magnesium, carnitine, Biotin today. Geesh!

If MRI has lesions, he might rec THE DRUGS. The bad batch of Avonex in 2004 nearly killed me, so I am leery.

What's the story on the new oral pills re side effects, effectiveness, safety?
I stopped following MS boards and news several years ago and it seems there are several new drugs? Thanks for any help!

Hi BBS, welcome back.:). Sorry to hear about your flare. Hopefully it will
have a short life span without leaving any permanent SX.

At my age, don't want to hear about any new bandaid meds...only a cure!!
Good luck to your choosing one, though.:hug:

I remember you!

Sorry MS has raised its ugly head again for you.

Yes, there are new drugs and more coming down the pipeline, I think. I'm not a big fan of MS drugs--my experiences with Avonex and later Copaxone made me think they weren't for someone like me because I have SPMS and have had it for a long time. But that's just my take on it. Others have had better outcomes.

Oral treatments:

Gilenya (fingolimod)

http://www.medicalnewstoday.com/releases/276197.php?tw

Aubagio

https://www.aubagio.com/

Tecfidera (dimethyl fumarate)

http://www.tecfidera.com/

Hi agate, thanks for your reply. I can learn what the pharmas and research say about the Meds that came out, but I was wondering what patients are saying about the newer pill Meds. Are there deaths? Significant problems with the pills. After what happened to me on Avonex and Biogens handling of it, am gun shy about it.

I was getting so cocky, doing so well for so long. This has been a rude awakening.

I've been taking Tecfidera since March with no problems.

I saw my neuro Monday for my first check-up since starting the Tec and he said my blood test that I had in July was perfect. No liver or wbc issues.

There is a specific thread on Tecfidera. I think there were several folks here beginning it at about the same time.

So I guess the newer drugs can also have bad effects such as low WBC and organ problems? Dang

Hi BBS!

I remember you fondly from BrainTalk and NeuroTalk (I'm still a member of both boards). You were one of the members I could count on for articulate, well-thought-out posts.

Sorry about your flare, but glad to see you here!

I'm afraid I don't know much about the current crop of DMDs, being too far into advanced MS myself. But I certainly understand about going along for so many years with relatively mild, stable MS and then suddenly getting blindsided by progression! That's how it was for me, too.

I wish you all kinds of well, BBS!

Arrietty (formerly Crow or crowquill)

Hi Crow! I remember you too! I thought Braintalk died. No??

I remember you! I remember when you've had to move across the state because of hurricanes. I remember when you had to rebuild your house. I remember when you took up gourmet cooking. And the swimming and the magazine article.

Welcome back,
ANN

Wow! You have an amazing memory!! Gourmet cooking has gone by the wayside and been replaced with surfing, my passion and reason for living :) and if MS takes away surfing you can bet G-d will have some 'splainin' to do!

I remember you too!!