With extreme sadness re: my health :(

RedPenguins · 12-14-2008, 08:30 PM

I have my head hung low today.

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.)

dmplaura · 12-14-2008, 08:45 PM

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.

Gazelle · 12-14-2008, 08:50 PM

How about A-Treat soda and Tastycakes?

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

Take a deep breath, step back, and regroup.

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

FinLady · 12-14-2008, 08:56 PM

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.

Hope you feel better soon and that 2009 is a better year.

ewizabeth · 12-14-2008, 09:00 PM

Aw Keri...

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...

Judy2 · 12-14-2008, 09:26 PM

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........

weegot5kiz · 12-17-2008, 07:22 PM

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

Snoopy · 12-15-2008, 07:32 AM

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

FaithS · 12-19-2008, 12:29 AM

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

SallyC · 12-19-2008, 12:39 AM

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

I hope so..

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