FINALLY; A Small Step Forward

I got the process of switching back to my
neurologist going back in December, I moved back to California, have had
several minor relapses (still having one now) and nothing happened. I called
often; nothing. I finally ran out of my prescriptions and I was making due
without my Ritalin (for energy), by drinking too much coffee and still wanting
to sleep come 7pm, but when I ran out of Klonopin it was too much. The noise was making my life hell and my chest was
constantly hurting, like a heavy pressure on my sternum that hit every time
someone put a metal fork down on a glass plate. It was making me a very
negative person. So yesterday I just drove down to my neurologist’s office to
talk to people face to face. I was not leaving without a prescription.
I showed up and (since everyone knows me)
the scheduler asked me “is everything ok?” to which I replied, “Well, not
really. I am relapsing right this second. I am out of meds and that is making
me feel worse. I need to know what is going on here. I am falling apart.” She
immediately pulled me up on her computer to start investigating and started
making calls to try to see why I am still pending in the system. No answers. So
she walked to my neurologist’s office, got my unsigned prescriptions I had
called about 4 days prior, found my neurologist, and had him sign. She told him
I am relapsing right now and he said he wanted to see me; like an appointment…. That day! She asked if I could come back in a
while so they could fit me in. I said yes (of coarse).
I went to the pharmacy, filled my
prescriptions, and while I was waiting for them I tried to find a ride to that
appointment. I was not feeling so great. So dizzy! No luck so I went home. I
had some time to kill. I fell asleep on the couch for a while, I needed the
rest to build the energy to drive back to the clinic during rush hour. I got
there 20 minutes early as always but the nurse announced that he was running
about 40 minutes behind. That’s typical and I am patient so it was no big deal.
40 minutes is nothing compared to 8 hours in the ER or on a cramped up plane.
The appointment went well, he confirmed everything
I suspected and he got me all set up. He is ordering MRI’s, a spinal tap,
Acthar, and he personally called to
see what was going on with my Tysabri. “Hey man, what’s going on with patient X,
Y and Z? apparently the mother ship has to actually call to get things moving” he
said while I hoped he knew the guy
I was happy to get my prescription but an
actual appointment that very day and my neurologist personally making calls to
get my Tysabri going because “you called this in back in December, that’s
bull-s**t”. Plus knowing I have some MRI’s and a spinal tap on the way to
finally see what is really going on with this JC positive crap? That’s good. I
don’t feel as hopelessly lost as I did before. I’m still falling behind on
bills since I can’t work but that is not as important as my health; money and
credit can be fixed but health issues like MS can cause permanent damage, which
I don’t want. That’s a* major reason I left the life I was building in Colorado
to come back to the “wonderful weather” of SoCal…
So as of now I can survive next month
financially but after that I am screwed. Taxes? Screwed. But I am trying not to
stress over something I can’t really change. Hopefully I will get my tax
returns soon so I can file and hurry up and get financial aid for school. Otherwise?
Well… I am in big trouble… Not thinking about it… I just want my Tysabri so I
can go back to work and NOT fall apart. I need my legs and don’t fancy being

One step at a time.

4 thoughts on “FINALLY; A Small Step Forward

  • January 28, 2015 at 5:26 am

    One step at a time indeed, Matt. I'm glad your proactive efforts paid off and neuro finally got things moving.

    I really hope you start to feel better soon or at least get more energy. Your realism and optimism continue to inspire me.

  • January 29, 2015 at 5:19 am

    Lost two comments, now I am fatigued! My question is 'Do/did you like your bike?' Sleep, relax and take your MS cocktail and all will be back to the status quo soon.
    With much empathy, Angela


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