I'm glad you decided to give it another try, Keri....You go girl..

Kerri,

Just saw your post and wanted to let you know how sorry I am that you are having a relapse. I remember feeling the same way you are last Spring when I had to stop taking tysabri, but I soon realized that I was not a failure and that I did not fail at these **** treatments, but rather they failed me. I think you are really brave. Hang in there.

keri,

i'm so sorry about your flare and mri results.
i hope the meds help you.

i can only imagine how disappointed you are but keep fighting.
sounds like you have a good team of drs.

my get well thoughts are with you.

keri,

Like others here, I have followed your progress with the med and am very disappointed that it is not the magic potion for you. You have a wonderful group of doctors and hopefully they will be able to get you back on the good life track.

Best wishes to you.

gmi

Keri, sorry you are having SX again, I know you were really stoked about the treatment. Like the others said it isnt your fault. All the meds are hit or miss and react to us all differently, you will do well in 2009 keep a positive outlook, yeah i know it can get a wee bit bleak looking at times, its a one step at a time procedure, hang in there and dont be so hard on yourself

Sorry about your flare, Red.

2008 has been a rough year for me, too. 2 exacerbations, both of which involved hospitalizations of 1-3 weeks.

Loss of a job (3rd job loss since 2002, due to MS), and beginning of disability payments. I'm grateful that I was approved quickly for SSDI, but it's not where I wanted my life to be at age 46.

Switched from Betaseron to Copaxone, because Betaseron was not effective for me. I hate Copaxone. Lots of side effects, including site reactions, burning, pain, etc.

I guess we'll both keep on fighting, OK?

~ Faith

How are you doing, Keri? Is the IVSM helping you get better?

I hope so..

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.