Hi everyone,

Thanks Sally for asking - I finished 6 days of IVSM on Thursday evening. I did 3 days @ 500mg, then 3 @ 1000mg. Oh man - the previous two times I had IVSM I sailed through it. This time - not so much. I mean, it wasn't hard - and the catheter actually stayed in one hand for 4 days and then 2 in the other, so that is good (and my arms don't make me look like a junkie!)... but emotionally, it is taking a HUGE toll on me.

I'm sure it's a combination of the devastation that I'm feeling on top of the actual feeling sick.

I want to stick my head in the sand - I feel physically worse every day and just hope that the steroids provide some relief.

I am going out to Hopkins on January 12th. Actually, they offered for me to come in on Monday - but I can't swing it that fast (with being sick and already doubting my ability to travel on Wednesday for the holidays).

The doc said there were options for me - so obviously we will discuss those in detail (and I will report when I know more)....but my guess is - I will re-dose on the HiCy....and my other (non medically trained thought) is that they may find doing two treatments of HiCy to be a good protocol to make sure they knock out all the MS garbage from the immune system.

I have only one regret with the HiCy so far - and that is that I didn't do enough with the 4 months of freedom that I had. I should've used that time to get healthier, exercise more, eat better, lose weight, etc. I know I just need to look forward now, but once again it's so hard.

I didn't expect 2009 to come in the way 2008 did.....I know - unlike many of you here, I've only been dealing with MS for a year (almost a year anyhow)...and I feel like I have NO right to complain.....but I guess with all that the docs have told me regarding the path that my MS has taken and how aggressive it is - I dunno...it's hard not to think long term and that this isn't going to suddenly become a benign course for me. Does that make sense at all? If not, my apologies - just took pain meds for bad headache.

Any minute now I hope to stop being on the verge of tears - as I have been for a week now. Devastation doesn't quite cover it. I just learned that I'm only the 2nd person out of the 29 who had HiCy who actually re-activated (with new active lesions).

Okay, going to lay down again.

Thank you all for your good thoughts.....and I will keep up the "good" fight for as long as I can......and I will be a lab rat, too....and hopefully we will find a better path for all of us in this world...

~Keri

Hi Keri,
I'm so sorry you are feeling close to tears these days. Those roids can really mess you up. My first round was right after the traumatic diagnosis (out of the blue) and I was weeping continuously for a few weeks. Have you tried some chocolate? You are a brownie junkie if I remember correctly, right? Cuddle up on the couch with a pan of brownies and watch a good movie.
I'm glad you've got an appointment lined up at JH. It sound likes they are taking really good care of you. And if you have to reboot a second time, well hey, no problem--it wasn't too bad the first time! Also, remind yourself that they haven't run out of options yet!
Take care,
Natalie

Red Penguin: I was officially diagnosed in April of 2007. I had symptoms in 1995 and 2003, however it was not official until 2007. My neuro said to me back then that I would be able to handle the MS a bit better as time went along and on the day that I did not think about it at all was the day I had accepted it. I know realize that walking through this journey is like the Stages of Mouring of a death of a love one. The loved one was your body. I am now in the acceptance stage and moving on. It has taken over a year. I had the pitty party, I blew up the baloons and had a cake. Several people attended with me. I was angry and said "Why me." I bargained with God and with myself. Allow yourself these stages. Allow your family these stages. This is a big deal. You are young and like the rest of us were likely a Type A person and were very strong and energetic and productive. You will come to accept it, but it draw on your inner core of strength. If you don't have a faith, find one. This site is going to offer great support. Surround yourself with positive thinking people. After you have moved through the stages, have your words and thoughts announce your recovery. By that I mean, continue to profess outwardly that you are well and vital. You have been diagnosed with MS. YOu may have it, but it does not have have to "have you." Sure life is different, but the sooner you move through these stages the better off you will be. You still have great deal to offer the world. This is NO TIME FOR SHAME. You are courageous every day you face this challenge. God bless your family.

Welcome, SweetP..

Agreed, welcome SweetP!

Keri, get out there and rock it girl! You'll find a solution

"No right to complain"?..Really, Keri? I'd be complaining loud & proud about now..Sounds like you have outstanding doctors to help ~ things WILL get better, I believe it and pray for it for you!

Aw Keri . I'm so sorry. Copaxone, interferon, and just recently Tysabri have failed me. I'm not relapsing but having severe headaches and other problems from the infusions. My neuro is giving me a little time to decide whether to go off of Ty. I just decided (with dh's help) to stop the infusions. I'm gonna try LDN next. I've only been diagnosed since May of 2007 and it has been a nightmare of a rollercoaster ride. I have to use a wheelchair at airports. It's actually pretty great ! You get to jump to the head of the line and board the plane first! Hey, we have to take the small advantages we get and use them! . I really hope the IVSM does the trick for you. I'm really thinking that 2009 HAS to be better for us all.

You have had a tough year, and I wish nothing but the best for you in 2009!

Its hard to keep your spirits up when you crash so hard and feel so bad, but it sounds as if you are able for the most part to keep a positive look on things. When I get the "Woe as me's" as I call them, I think of one thing: It always comes down to just two options: Keep going, or give up. Most people opt to keep going, no matter how hard it is.

Keep going. Its amazing what we can do.

You're amazing.