Rebound, Tysabri, LP, MRI’s, Solu Cortef, IVIG

I have been relapsing so bad for… I am not even sure how
long. It feels like forever. I mostly
cannot see or coordinate my hands/arms all of which makes tying quite an
endeavor. In fact, to do anything on my own is a huge feat right now; even
typing the few words you have read so far is a strenuous task.
Double vision, blurred vision, ataxia, fine motor issues, dizziness,
vertigo, trouble walking, loss of depth perception, the list goes on. I don’t
have to say it to make it known that it’s miserable. But I have bounced back
from much worse (obviously) but this is not a normal relapse. “Immune
Reconstitution” or as most people call it, a rebound. My immune system has been
suppressed and since I was not on the medication suppressing my boiling water
(for 3 months) my immune system was allowed to build pressure that finally
exploded (once the lid keeping in the boiling water in this pot of a body was
unlatched). A lot of “pressure” released; a lot of collateral damage.
I have been resting; lying in bed watching TV and loosing my
mind. I forgot how this all felt: I forgot what it was like to wake up every
morning hoping that it would finally be the day I can see. Since I moved back
to California I have been trying to get in to see my overbooked neurologist.
When I started “relapsing” I drove to his office and he saw me that day. He was so mad; my insurance
kept denying my medications and the tests he wanted to run. After some angry
phone calls (some of which I witnessed) everything was magically approved.
I got my prescriptions and came in a day later for my
Tysabri along with some Solu Cortef (since my doctor did not want me waiting
even a day for them to deliver Acthar). Solu Cortef is a steroid like Solu
Medrol but somehow different. I am not sure how but it is and it took about 15
minutes to infuse; it’s a one time deal. The next day I had an LP/spinal tap. I
lied flat and drank water nonstop for almost 2 days and guess what? No
headache!
Now I am waiting for these symptoms to clear up so I can get
back to life. I am also waiting to have my MRIs and my IVIG appointments
scheduled. Maybe I will be able to start school next semester since I didn’t
really make this one. Mostly I want my independence back. I can barely make it 15
feet (5 meters) to the bathroom without falling. I can hardly see which
obviously means no driving. Luckily the vertigo seems to be gone but I still
feel sick if I move my head too fast. I am still dizzy as well. My depth
perception is a tad better; if I try to place something at the edge of the
table it usually does not fall to the ground now, usually. I still go crazy
every time I hit two keys on the keyboard or look up at the screen after typing
a word to see that all the letters are wrong; I was typing with my hands
shifted either left or right while thinking they were centered.
It’s so hard to watch all the action movies I have been
watching when my body is falling apart. I wish I could do what those actors do
to achieve those bodies…. I wish I could focus on building myself like that but
instead I have to focus on not breaking down. UGH!

Still, this is a good reminder of everything I am taking for
granted. I have not relapsed in over 2 years and during that time what have I
done? Not as much as I could have.

5 Responses to Rebound, Tysabri, LP, MRI’s, Solu Cortef, IVIG

  1. Jan H. Maaso says:

    Brutal! I hope the medication puts an end to the worst of it.

    I started a blog a couple of weeks ago to get outlet for a lot of pent-up feelings myself. I know you will literally have time to kill right now and maybe you want to have a look? It would be awesome if you or someone else reading could benefit from my experiences:
    http://sykkel-jan.blogspot.nl/

    I've been through this so I know there is hope.

    All the best.
    Jan

  2. Antoinette says:

    Hey Matt hang in there. Great blog as usual though I was glad u had restarted life I am now mad that you have to go through all this. You know I knew when I suggested your neuro to you back then that it was a great fit. Can't wait to hear your new adventures when your stable again.

  3. Hi Matt
    My name is Eilene. I am 33 and was diagnosed in October 2014. I had been misdiagnosed by my local hospital and 5 doctors subsequently since February 2012. I had done a 13 mile bike ride and woke up the next day numb from my shoulder down on my left side. It took a full year for that flare to mostly go away on its own because I had no treatment. Turns out the radiologist reading my MRIs from my first hospital visit completely missed all the lesions and every other doctor after that didn't look at the MRIs, just the written report which was obviously wrong. Finally during the worst flare ever this past October, I went to a good hospital over an hour away. That's where I spent the next week, got to meet good ole solumedrol and experience the testing that comes with an MS diagnosis. Since then I have been treated for another severe flare and am about to start Copaxone.
    I want you to know that your story has been inspiring and truly helpful. You are helping others like me, who feel that nobody "gets it" and are living inside this lonely disease. I have my days where I'm over it all and when I see that you feel that way too, I realize it's ok to have moments like that. You have so much passion and fight in you! I just want you to know how much I appreciate you and your blog. It does make a difference and you are helping people like me. 😊

    • Glad you found my blog helpful. but wow. Not that I would have known what to look for at the time of my diagnosis but THAT is why I get copies of all my tests including all my MRI's. My current doctor pointed out things my diagnosing dr. never saw on my scan; nothing in the reports… But anyways, thank you.

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