Questions for MS neuros? Talk tonight

[Lulu54]

Sorry for the late notice but I am attending an open panel discussion sponsored by my MS Center and there will be a couple MS neuros there - do you have any questions you would like me to try to get answered?  I am always happy to take a list and do my best....

Laura

[vandyfan10]

Thank you Laura.  My paternal grandmother has macular degeneration & that is a concern for me for sure.

Thanks again!
Erica

[Lulu54]

The theme of the evening was on this topic and I will be writing a blog on it later - in the meantime I will try to compile some tips for you.  I found it all very useful and informative.

So sorry you are getting hit like this, Laura

[Lulu54]

Erica, they did not discuss DMTs directly and it turned out there was a theme to the discussion, which coincides with JJ's question. They were focusing on fatigue and depression and I have lots of good stuff to share once I get my notes together and write up something.

The Gilenya VS Tecfidera question has come up before with them - his bottom line answer is it 'depends' on so many factors.  Gilenya is a good drug, but is out if you have heart problems or reasons to be concerned about macular degeneration.  Other than those two side effects, it is very efficient and a good track record of reducing relapses.  

Tecfidera is also a good drug, but there are increasing numbers of people talking about digestive problems and problems with the flushing and itching that hasn't quieted after several months of use.  Again, that isn't everyone - just a few people who are speaking up.

I wish we had biomarker tests available NOW to let people know what DMT will work best for their particular type of MS - we are fortunate, though that if one drug doesn't work out for us there are others we can try.

Good luck with the Gilenya - I hope it is a good fit for you.
~Laura

[supermum_ms]

Hey Laura,

I'm dealing with some heavy duty fatigue lately though not as strong as the lassitude fatigue i've had prior but its throwing me down the rabbit hole to fast to function, for me it means i'm battling basics with my top 3 being walking, talking and vision, which is exhausting...... If i'm honest with my self, its become a very common theme after i've been active, throw in the muscle fatigue when i've pushed it and i'm stuck in the rabbit hole and struggling to get out.  

So i'd love it if you asked or kept your ear out for if there is any research currently happening and or 'new' meds coming out, that are specifically relating to 'fatigue'?

Thanks babe.............JJ

[vandyfan10]

I would LOVE to know their thoughts on the choice between Gilenya (Fingolimod) & Tecfidera (Dimethyl fumarate).  Which one they prefer, works best, etc. I am supposed to be meeting with a nurse from Gilenya on Friday & any questions they suggest me to ask them would be nice too.  ANY info would be great!!  

Thanks so much!
Erica