It's my one year celebration of the last MS relapse I have had! The spots on the party hat represent healed up myelin and the fringe around the edge are my happy little axons.
If you had told me a year ago that I could go for an entire year without taking steroids, using my cane, being numb, being tired, or worrying about if this was the downhill slide into MS oblivion, I'd have never believed you. I think back a year ago to where I was...
I was doctorless since my previous neuro had suffered a massive stroke 2 years prior. The other neurologists were either a) not taking new patients, b) not taking MS patients or c) not taking medicaid. So I was suffering along, going to the ER whenever I felt a relapse was just getting way out of hand and I needed the IV punch.
My primary care doc was just as frustrated as I was. I kept going to see him and he kept saying I really needed to see a neurologist to get a handle on things. I told him I had called an MS center in Jacksonville but got almost all the way through setting up an appointment only to be shot down when I found out they didn't take Medicaid. Sheesh! Guess it doesn't pay to be self-employed and uninsured at diagnosis. You should only get MS if you are independently wealthy, fully covered by every possible type of insurance, and enjoy frittering away money on things like shots.
Anyhow, my PCP got me an appointment with the Comprehensive MS Center at Shands Jacksonville and my life changing journey began that day.
I was scared, in pain, in the grips of unrelenting MS attacks that just kept knocking me back down every time I stood up and caught my breath, like merciless waves at the beach.
Today I am in a totally new place. A place that is located on the outskirts of Normal, just a stone's throw from Mundane. The town is known as My Happy Place and if this is as good as it gets, I can live with that.
I'm going to make it a competition with whoever wants to take me on. I'm going to see just how many of these yearly celebrations I can have in a row before I get my butt kicked once again by MS. I'm realistic; I know it will happen -- I just hope it's not for a really long time.
I'll be hitting the 9 month mark on Fingolimod (or possibly Avonex, but I doubt it) on the 20th of this month. For all of you considering starting the trial (as I have read on message boards), by all means give it some thought. I can't say enough good things about this stuff....they should really be paying me to be their #1 spokesperson.
I'll be back soon to tell you about the bathroom remodel. It's chock full of side splitting hilarity....or at least now that's it's nearly over and I can look back on it. Maybe not so funny at the time.
8 comments:
Congratulations! Yours is such an amazingly good and happy story to read. Never having had to face what you have, I can only imagine the feeling of joy. God bless, and continued good luck!
I'm so happy for! And I'm sad for you to have to deal with the uninsured/medicaid crude.
At the time of my first relapse, optic neuritis (who knew that depression could be an early sign of MS), I was uninsured, having left full-time graduate school health coverage, living in a new state and just beginning to work as a self-employed musician. The best words I ever heard and read were "no evidence of any demyelinating disease. I applied for individual health insurance six months later and miraculously passed the underwriting process, even with the ON episode and a history of depression years before.
I remembered thinking that I never wanted to go through ON or Solumedrol ever again. But five years later, I was in the MRI machines, referred to a neurologist, going through the high-dose steroids, and diagnosed with MS. This time I thought, if I only have to go through that once every five years, then ok, I'll survive.
Then I was being hooked up to the drip again only five months later. Boo, I had thought I would have gotten more time between bad episodes. But then I made it two years after having started copaxone.
Enjoy your celebration. Here's to many more.
Hey There,
A question, because I am confused: I thought Avonex was one of the "standard" (i.e. - already accepted, out of clinical trials, past the "experimental phase") drugs, no?
If so, then why do you say you are doing a "trial"?
-X.
Hi! I am sorry for the confusion!
I am in the clinical trial that pits Fingolimod (the investigational drug) in either of 2 doses (.5mg or 1.25mg) against the already approved Avonex.
There is no placebo in this study which is why I was eager to join. I had a 66% chance of getting one or the other of the Fingolimod doses, or a 33% chance of getting Avonex.
Since I don't have any discernible side effects that are common to the interferons (such as Avonex) I feel quite certain that I am on the real Fingolimod.
Quite often clinical trials compare one drug to another as far as efficacy and safety go. Therefore, it is possible to have clinical trials like the one I am in where I could very possibly be receiving an already FDA approved drug.
Good question and sorry for the confusion.
Well, I for one am TICKLED PINK with your progress!!! NO wait...that's YOU, Tickled Pink. OK...sigh...how 'bout "I'm as happy as a pig in sh!+'?!?
Yep, that's more like me...congrats!
Linda D. in Seattle
I am so proud of you and so happy you had a good year. Here's to many many more!
Hugs!!!
it's so good that you had a fantastic year!!
i am starting month 10 in the fty-study today, can you believe it? well, i can't! time flies! i still have those stupid side effects that hint i might be on avonex - but we discussed the extention of the trial today (i had my 9 months check up today) - it turns out that my ms-score is back to 0 (as in Z-E-R-O!), after a couple of relapses in my first year with ms and the meds ... i was so scared at times, so i can totally relate to your fear of "downhill slide into MS oblivion" ...
You are an inspiration to so many with your blog. You not only have so much insight to share with others, but your writing style and humor make it such a pleasure to follow your journey, even if it is by proxy!
Deborah
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