Re-Introduction!!

[funmonkeytoes]

I am a member that's been away for a while....we all have those times when the actual "living" with MS is about all we can handle.  Well, I was there.  But, now I am back and here to share my own story and try my best to help others with this disease get through it one day at a time. There's a lot of information to be had here -- even if you think your issue is "obscure".  There are no two cases exactly alike, no two reactions to drugs exactly the same, etc......but as a part of the MS Community for nine years now [with a complicated and aggressive course] I know that sometimes all you need is someone that knows what you're feeling to tell you, "Hey, it'll be okay".  They've been where you are OR worse.

As I wrote -- I was dx nine years ago with RRMS, but within two years my dx changed to SPMS (or PRMS -depending on the drug the docs are trying to get approved;) .  I have truly been through a lot.  I am completely bedridden at 40 -- and I have been through just about every drug -- FDA approved and off-label prescribed.  I'll list my previous meds so you won't have to ask:  Copaxone, Betaseron, Monthly Solu-Medrol, Novantrone, Rebif, Tysabri (one dose), Imuran/Copaxone, IVIg, Tysabri (five doses), IVIg/Solu-Medrol.  Those are just the the disease-modifying drugs!  Wow!  I have a great medical team which consists of a GP, Therapist, Neurologist, and an Immunologist that all work together to help keep me here and in good spirits.

Right now I'm again in the midst of trying to find a new medication.  I have gone from good mobility to no mobility in the last three years.  My Immunologist is looking at mostly the chemotherapeutic drugs because Novantrone seemed to give me the best outcome with a nine-month remission.  I'll keep you posted!

I'm glad to be back.....and don't hesitate to ask ANY question if you have one.  There's a wonderful network of people here --I thank you all [you know who you are] for not forgetting about me!

Love & Light,
Debra -- Funmonkeytoes

[Sarahsmom46]

It is so nice to meet you.  

My name is Julie and I have only been a member since July 08.  

I hope we will hear more from you.  What you are going through is terribly difficult  for me to imagine, but one thing I know for sure is that what you share with your experiences will help others like myself.  If you are interested in sharing, I for one am interested in hearing and learning from you.  

I hope and pray that there is something out there or a new drug about to be put on the market that will start helping you.  I'll keep you in my thoughts.

Julie

[sllowe]

Debra!

Yay!!!!!!!!!!!!!!!!  You've made it back to us!  We've missed you! I wish this were not the course for you, or for anyone, but happy to hear this team is aggressive and coordinated for you brings hope.  As do you Debra.  You still have that fight in you.  If you don't mind me asking, how do you make out at home? I pray you are in the best of care.  Did you gain any more mobility w/the novantrone?

Your spirits sound good today girl, and I hope you can feel all the excitement and encouragement your return brings.  We've thought of you often.  Thank you too for speaking to "living MS," sharing your course, and brining hope to all of our forum family.  

((((healing hugs)))))))
Shelly

[wonko]

I love your handle!  Is there a backstory to it?

Thank you in advance for wanting to share your experiences and story with the forum.  I have no diagnosis, but I've been using this site since around March.  I know when I first washed up, it was amazing to find people willing to discuss and share about all of the nonsense that I felt so alone about!  It's neat that so many can benefit from the experiences and ideas we share here.

Welcome back!