I Started Ampyra – I am Loosing My Mind

First of all, I have not been blogging because my laptop’s
power adapter died so I had to order a new one and wait for it to get
delivered. What luck, the one thing making me a little money broke and cost me money to fix so that I could
continue using it to make the little money I make. But I got the new charger so
I am getting back on track.
A week or so without a computer gave me even more time to
just sit and think (for better or for worse). I am very unhappy with my life.
The heat of SoCal is approaching and I am finding out how poorly the room I am
staying in is insulated. Yesterday was only 93 degrees Fahrenheit (almost 34C)
and I say only because soon it will be between 110 and 115 degrees (43C
to 46C). The desert is awesome! Not! OK but here is my point; even
with the portable A/C I bought on full blast, the house A/C on and the
Styrofoam insulation walls I set up, my room was stuck at about 77 degrees
(25C) which is not too bad despite
the fact that I start feeling weird when it hits about 75 (23C). Thing is. If
my A/C is struggling to keep it at 77 when it’s only 93 outside what will it be
like when it’s 110 outside?
I didn’t foresee this issue when I moved back from Colorado;
the portable A/C worked great in my
room before I moved out so surely if I bought a bigger one it would work even
better right? Obviously not but why? Well I thought about it; hot air rises and
cold air falls. I am now on the second floor of a poorly insulated house. Hot
air from downstairs rises into my room and the cold air I generate falls downstairs. The hot air in the attic
expands and pushes it’s way into my room through the ceiling. So I have a
pocket of hot air pushing it’s way into my room from below me and from above me
making me the melted cheese between two hot slices of bread. Trying to cool
this room is like trying to put out a fire with a bucket of what while someone
else pours a bucket of gasoline on it. The water is going to loose.
So not only is it miserable outside but it’s miserable inside.
I can’t seem to escape this heat which is making me so fatigued, dizzy, loose
my vision, loose my balance and just feel horrible. I hate it here! 93 degrees here
and then I have friends from Colorado texting me pictures of their weather apps
and it is 63 degrees (17C), raining and lightning. I would give anything to go
back. I do not belong here, Moving back to California was probably the most
regrettable thing I have ever done. Sure I was a little lonely but all things
considered? I was much happier. Now I am not well enough to move back and I am
in an environment that is keeping me from recovering. Heat and stress are my
main triggers and there is no shortage of that here! Looking back at that water
and gasoline analogy? You could consider the bucket of water to be my Tysabri
and it would work just the same; Tysabri is not going to work it’s magic with
all this “gasoline”… –Sigh- I was such a fool to move back. I should have
risked the possibility of PML and I would still have a job, an apartment and
live somewhere I love. I would be happy.
So I am going to start looking for a lawyer to help me with
my SSI/SSDI (benefits) situation. If I can get SSDI then that would solve
everything even if I still had to pay back the $25,000 I got from SSI over the
years. I could pay my bills, move back to Colorado, still make a little cash on
the side, live with some friends who want
to help me out, get healthy and be happy. Of coarse that sounds too perfect and life has done a good job
at teaching me that “if it sounds too good to be true it probably is” so I have
no expectations. But I can imagine.
Anyways, I started Ampyra, the only medication approved for
treating a symptom of MS (walking) indicated by an increase in walking speed.
Lots of people seem to report many other improvements such as better gate,
better balance, less ataxia and so on but like any other medication for MS it affects
everyone differently. I have no idea if what they are reporting is simply psychosomatic
or if it really is helping in those other areas. I have no idea what to expect
but I barely started about 3 days ago (I think) and they say it takes an
average of 2-4 weeks to see results. I hope I do because this was expensive
stuff. Another reason SSDI would be nice; I could afford my medication! You
know it’s depressing to realize that it costs you money you don’t really have
to simply be alive. Not alive and doing great but just alive!
I wonder what I would be doing in life if I was a “normal”
25 year old male (ok I am 25 in 5 days but same difference) who did not have to
worry about the things I do. Who just had to worry about his phone bill and car
payment instead of medication costs and infusion costs. Who was not so
comfortable with needles and who had not grown to see a monthly infusion and
monthly blood work as routine. Second nature. To not know all that I know about
health and to not know what it is like to sit in a room full of people where
the only people with canes are people in their 50’s and me. I can’t imagine
another life outside of what I live. I can’t imagine how I would think, what
I would think about, what I would be doing with my life or who I would be.
Multiple Sclerosis really has consumed my life and who I am. Kind of sad.

Oh yeah, I have been wondering. How will I ever get off
Tysabri since I am obviously a prime candidate for the whole rebound thing? I
am JC positive so I have to get off at some
. I would love to be on a treatment that I could self-administer and
take with me. I could go away for the summer and not have a 2 weeks limit
because “I have to get back for blood work and my infusion that has to be done
back home”. Tysabri has been great but it really is starting to feel like an
anchor; not even a ball and chain, a chain attached to a hook in the ground. I
have not been able to do much research since my computer has been down but I
did read once that the chances of rebounding when stopping Tysabri can be
greatly reduced if you stop and 2 weeks later start Gilenya without any sort of
wash-out period for Tysabri but I am not really sure if there is any truth to
this. It sort of makes sense but I need more information and I would like to
ask my neurologist about this. You see something I realized while sitting and
thinking all week is that I would rather be in a wheelchair and only live 5
more years but be around people in an environment that makes me happy than live
50 more years and able to walk in an environment that makes me miserable. I
just want to be happy and something
has to change to achieve that. Things don’t change unless you make them change
so I want to explore different options now that I know what I really want in
life and what I can realistically achieve right now. I will always aspire and
fight for greater but how will I ever make it towards anything better if I am
unhappy with my life? I really am not sure what to do but it’s all I have been
thinking about when I wake up, go to sleep and dream so I will figure something
out. Life is a game of chess and sure it’s easy to just move a pawn forward but
I want a well thought out strategy to take out that king.

13 thoughts on “I Started Ampyra – I am Loosing My Mind

  • May 31, 2015 at 9:58 pm

    This confirms the point I made in my last poem, When It Comes Early, in which I stated that while MS is always unfortunate, whatever age it comes, it is especially so when it comes early. In the comments, one person disagreed. In my own comment, I ended up writing what would have amounted to a full prose post disputing that position. Here's the link in case you're interested:


    • June 1, 2015 at 2:33 pm

      I can't/won't say I have it worse, we all have our battles. For people diagnosed BEFORE they have a career it's near impossible to start a life with no savings, retirement, etc. It's like starting a game of chess against life who has all their pieces and you only have pawns. How do you win?

  • June 1, 2015 at 4:31 am

    Hi Matt, I sent you an e-mail a week or so ago and appreciate your candid and courageous honesty. It makes me feel less alone. I start tysabri next week, because my walking has really taken a nose dive in the last year. I've been on Tecfidera and Ampyra for 1.5 years and am JC+. My plan is to see how Tysabri works for me and keep an eye on Lemtrada as a possible back-up plan it my JC numbers start to creep up. If and when the do I'm hopeful there will be new and more testimonials on Lemtrada. Hang in there and keep cool and calm and carry on. John B

    • June 1, 2015 at 2:35 pm

      yeah I wish I had more time but I feel like my Tysabri hour glass is running out of sand an FAST

    • June 10, 2015 at 10:22 pm

      Hi John,Could you keep us posted on how the tysabri is going.Did it help.I wish you the best of Luck.I ,unfortunately might have to come off it.I'm researching Lemtrada.

    • June 11, 2015 at 5:01 pm

      So far so good. Second infusion scheduled for 7/1.

  • June 1, 2015 at 8:23 am

    Hi Matt, I've been a long time follower of your blog. I, too, and trying to figure out the best way to switch from Tysabri and came across this article (http://www.ncbi.nlm.nih.gov/m/pubmed/26024899/) about different washout periods when switching from Tysabri to Gilyena. I'm also curious about your take on Lemtrada. I'm cautiously very optimistic…I figure it's not much scarier than using Tysabri, I'm not sure what all the fuss is about. Best of luck to you!

    • June 1, 2015 at 2:36 pm

      Honestly I have not researched anything enough to have a solid opinion because I have been so happy on Tysabri but now I have to start researching, it's just finding the energy to do so…

  • June 1, 2015 at 12:48 pm

    Lemtrada is being used in Penn .hospitals now. And many doctors are reducing tysabri to every six or eight weeks. Their is an article on the internet about reducing tysabri injections and pml .For those with high co pays every 8 weeks is helpful. Lemtrada is chemo.Some doctors give novatrone(chem) to people with aggressive ms.I think TERRY WAHLS says something about chemo.

    • June 1, 2015 at 2:38 pm

      They have been playing with 8 weeks vs 4 weeks for a couple years. I have brought it up out of curiosity but my neuro didn't agree with it. I have never met someone who tried Novatrone and DIDN'T regret it lol.

  • June 1, 2015 at 3:18 pm

    Please read your email.I sent you something about social security benefits .That's something I know about. As far as novatrone, I merely mentioned it because that's what people did before Lemtrada.Some of the most prominent neurologists in the U.S.A ARE IN A RETROSPECTIVE STUDY ON TYSABRI EXTENDED DOSE.I will send the email to you.

  • June 29, 2015 at 3:38 pm

    i have been using ampyra for years. i started with a specialty compounded stuff called 4-AP, but the ampyra is more consistent. and yes, it is very expensive. but i know it works, there have been times when i've run out and def noticed the change. good luck with it.

  • March 7, 2016 at 8:46 pm

    I have hereditary spastic parapaleighia,and am now using Ampyra hoping to have some good bennifits also with using this.thers with my disabilty have gotten good results also.


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