With extreme sadness re: my health :(
 

I have my head hung low today. :paperbag:

Well, it seems that 2008 was never meant to be my year. From the very start, on Jan 4, when I was diagnosed with MS out of the blue...

After faring so well for the 4.5 months since my experimental treatment, I thought I was pretty much home free. After all, in the first 6 months of 2008, I had not gone more than a week without my health worsening and new symptoms/disabilities appearing. I celebrated with glee.

And then a little over a week ago, the glee started to lack it's shine. I began having symptoms.

I saw my local neurologist last Tuesday and he agreed that I was having a flare-up. We had thought that it was a pseudo flare-up (caused by external factors such as stress, hormones, infection, etc.). When I spoke with my doctors at Hopkins, they said to go for an MRI immediately and have blood/urine labs done (and not wait until end of December for my 6 month review).

The blood work and urine came up negative for signs of infection.

On Friday I had an MRI and they did the reading stat...so my doctor knew the results within a few hours. (Un)Fortunately, the MRI tech had told me all that I needed to know - when injected with the dye, the MRI "lit up like a Christmas tree" meaning that I had active lesions. This was no pseudo flare - it was a full blown exacerbation with new damage in my brain. Of course, I didn't get overly upset until the doctor confirmed it at 6pm on Friday.

On Saturday afternoon I began IV steroid treatment. The nurse will come to my home daily for 6 days to administer high dose steroids in an attempt to lessen some of the symptoms. Yippy. Nothing like an IV pole in your family room to spread the holiday cheer. (oooh, maybe I should deck it out with Xmas lights??) Having double vision while looking at christmas lights outside is certainly a fun show, though.

The original prediction of my disease course before I had the chemo treatment was that I would be in a wheelchair by Christmas. Well, while I won't fully be in a wheelchair in 2 weeks - I know I will be having to use one in the airports while traveling.

I am still besides myself and totally devastated. I feel like an utter failure. Definitely need to figure out how it is that I have shame that the treatment isn't working.

2008 isn't going out much better than it started.

(And yes, if you have some cheese to go with my whine, I will gladly take it. Though I'm not much of a cheese person, I do like Polly-O mozzarella cheese, which I just can't find out here in Los Angeles...it seems to be another one of those East Coast things - like Drakes Cakes. Oh, and if you're going to send the cheese, why not add in some Dunkin Donuts too, please.)

You're not an utter failure because a treatment option didn't work like a magic wand being waved around with fairy dust. I hope you're feeling better soon and that 2009 proves to be a better year for you. :hug:

How about A-Treat soda and Tastycakes?

:hug::hug::hug::hug:

You can't cause medications to work. You are NOT to blame for this.

Take a deep breath, step back, and regroup. :hug::hug:

Most important thing right now is for you to get yourself feeling better.

Sorry to hear that particular treatment didn't work out for ya. :( Remember it was the med that failed you, not the other way around. :hug::hug: Hope you feel better soon and that 2009 is a better year.

Aw Keri... :( :hug: :hug: :hug:

I'm sorry for the flare-up but I hope it remits soon. It is not your fault that the treatment failed.... I also hope 2009 will be a much better year for you... :hug:

I'm so sorry your treatment results have "gone south", Keri. Please don't beat yourself up though, it's just the nature of this beast we live with. Concentrate on feeling better now, then you and your doc can decide what to try next. As I'm sure you know, what works for one person may not work for another, plus there are no guarantees.

Don't lose hope -- 2009 is coming and that "magic pill" may come along! Take care........:)

Don't feel like a failure, because the treatment hasn't stopped the progression. Hold your head high because you took a chance on a new treatment!! I'm so sorry you are having a new set-back, hope the roids get you back on track.

Keri, what exactly is the claim with regard to HiCy? Is it hoped to affect disease progression, or relapse rates, or ??

As I explained in your other thread, having a relapse (or not) doesn't mean that the disease process hasn't slowed. What I am waiting for is a drug that claims to affect the DISEASE, not just one inconvenient component of the disease. While it is nice to not have as many relapses, if I still end up in the same position/condition I would otherwise have been in 10 - 15 yrs anyway, I don't care to take a boat-load of drugs just to avoid relapses. :rolleyes:

It may be that this drug is working in some way, but only time will tell. I do not think you can judge it's effectiveness on having a relapse though. :hug:

You've tried the biggest guns; Tysabri and HiCy . . . so how about trying a itty bitty 4.5 mg pill of LDN now . . . ?

My points are there are still other options out there, so don't get too discouraged. Also that no matter what we take, it doesn't mean we won't have ANY relapses . . . they haven't found a cure (especially for ALL aspects of this disease) as it is just too misunderstood and complex of a disease yet.

Cherie

:hug: Your not a failure, MS is. :hug:

Kicking that treatment out the door...wiping hands of it!:mad:

Over and done and moving on to somethang else!

That's what we do around here. If something is not working..try something else!

You know..it is okay if you use a wheelchair at the airport. Some of those airports are huge! Don't sweat it! Relax and enjoy the ride!

and.....((((((RedPenguins))))))

Taffy is right...if that didn't work, keep trying until you find one that does. Having a relapse does not mean that after you fight, bang, ding your way through it you won't be almost like new.

Many of us have had those really bad experiences and we still manage to slowly steam and chug our way down the river. lol

Hang in there, and don't give up...which I know you won't and we will be here to yell from the sidelines as you run for the finish line.:p

If you need to use a mobile aid for a few months, hey its ok...you haven't failed unless you have given up...:hug::hug:

Oh, Keri I am so so sorry. I cried when reading this. I thought you had found your cure. I am so mad for you....RATTTTTS.:mad:

I hope the IVSM does the job and stops your exacerbation in it's tracks. When you are better, we can talk about what next.

I hate this disease..

(((((((((((((Keri))))))))))))

Keri

Get through the IVSM and see where you are then. Don't worry about the what ifs, take care of yourself. Nothing is ever carved in stone and this wasn't a claim of a cure. As we all know, not everything works for everyone and you now just have to wait and see where you go from here.

Relax, plenty of fluids and rest. That's what you need right now...not beating yourself up!

:hug:

Keri,
Please don't blame yourself! You didn't do a thing wrong. You're very brave for giving the HiCy a try. Good luck with the steroids and feel better soon.:hug:

Thank you everyone. I'm trying to be "okay" right now - but it's SO hard. The word devastated doesn't even begin to cover it.

I sent an email to my doc at Hopkins and he wrote back earlier today. He said I had options and not to worry. As of now, I think I will re-dose with the HiCy again and maybe they will make modifications. I'm not a doctor and I don't play one on tv....but, eh, I have some thoughts. LOL

I will be sending them a copy of the MRI tomorrow and then faxing the full report to them as soon as it's written up. I will be going out to see them in January.

I'm not giving up....at least not yet. I'm more of a fighter than I ever thought I'd be - this disease has taught me that much.

Think I will tell the doctor that I tolerated the first round of HiCy with too much ease - this time I want to be sick as a dog, on death's door, puking up my innards - and heck, I'd like to lose a few pounds this time (I gained weight last time!).... Then I will know I got the right dosing!! :)

My body and mind are definitely not cooperating with me. Put up the Xmas tree - and managed to drop 5 glass ornaments - all of which broke. That was after I broke two glass dishes earlier. Very sad. I thought I was passed all of this. One hand is very weak - and the "good" hand has the IV line hanging out of it - so it isn't usable at the moment.

I'm really for 2008 to be over!!

~Keri

I'm not going to say "Don't worry" because I want to smack people that say that to me. Duh, why didn't I think of not worrying?

Once you've had some time to absorb all of this, you will of course see that there is no shame or guilt in having the disease, in "failing" to respond to treatment, in having an exacerbation. NOR is there anything wrong with occasionally kicking the wall (please don't kick the cat) and venting. This is a good place to vent.

Give yourself a little time. Sometimes change is for the worse, but we adapt nevertheless.

You have my empathy and my prayers, but you are NOT getting my Polly-O's. (Bob, lock the refrigferator)

Keri :hug::hug::hug:, we are fighters! We may be knocked down a few times or a lot, lay there dazed for awhile, but then we usually always drag ourselves back up and keep on going. :)

Like you said, you may not be a doctor but you are smart and can figure things out. Besides, you know your body better than the docs can know it.

I know it's hard to start using mobility aids, but then you discover how much easier it is to get around and how much safer they make your life.

Best of luck with the IVSM. I'll think of you, because I start mine this afternoon. :Good-Luck:

Keri,

I am very, very sorry to hear about your lastest exacerbation. Has HiCy failed you or is this simply a bump in the road? Who knows, but, it's definitely NOT your fault.

Take care of yourself :hug:

Keri - I am so sorry to hear that you are going through all of this right now :hug:. I think it always makes things worse when we are doing well for a few months and then something creeps up and knocks up back a lot (I don't have MS but have a similar problem that works in the same way as MS).

I wish I had a magic-wand to make you feel better - I hate that you are all having to go through all of this ((hugs)). I agree with what the others have said though, please, please, please don't feel guilty - you are NOT a failure and in NO way is it your fault that the medications aren't working for you and that you have MS! As you probably know, MS will do what it wants to when it wants unfortunately and there is nothing you can do ((hugs))!!

Please know that I am keeping you in my thoughts and prayers and really hope that you find something that will help you and that you get relief real soon.

Love, Alison.

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:hug:

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

I hope so..:hug:

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? :D 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! :hug:
Take care,
Natalie

Stages of Multiple Sclerosis-Likened to Stages of Mourning
 

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..:hug:

Agreed, welcome SweetP!

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

Aw Keri :hug:. 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. :hug: :hug:

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.:hug: