Multiple Sclerosis Spasticity, Tysabri?

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Man, what has been going on lately? Not sure, everything is just… Gone. My memory is just ridiculous… Since I did not write anything down, I feel like nothing happened. Such an odd feeling, I hate it. I wonder if I have a lesion on my hippocampus (look it up haha)? I need to request my MRI scans (from the hospital earlier this year) when I see my neurologist on the 15th. I have been putting that off all year, I would like to see my scans for myself, well, I SHOULD want to see them, but like I said, I have been putting it off…

So one thing I did do was spend a few days with a friend of mine who has MS as well. Her friend flew down from up north so we all went to the OC fair, it was fun, though I must admit, the fair is not the same in a wheelchair staring at everyone’s butt… When you have no choice you just don’t want to look, not even at the attractive blonde in the tight red dress in high heels… That’s not what you wear to the fair, horrible walking shoes, your gate now looks like… Mine… It was nice to get out but I forgot what kind of unhealthy food existed out there! Wow! I feel so healthy now! I do have to say my pride still hurts, I hate the wheelchair and though I appreciate it and know she thought nothing of it, having a girl whom you just met push you in a wheelchair, it is not… Well… It hurt my pride haha… Still had fun!

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We also spent some time at my friend’s sister’s house, her sister had a baby recently, so I took pictures for her, nothing fancy, but I had my camera so I snapped some shots. I find it kind of odd, got my glasses fixed the other day, but I still prefer to take photos without them on even though they do crisp up my vision… Just more comfortable without on I guess… Does not seem to effect the quality of my photos, not as much as my physical limitations do if you ask me.

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Oh yeah, I have to admit something… I have been drinking coffee… Stayed away from it for two years as a result of my restless leg syndrome (RLS) but I am drinking it again… The drowsiness from the Baclofen started it. Baclofen does not make me tired anymore, in fact, it has stopped working all together. But I started the habit back up and now I can’t stop. Well, I can (like all addicts say) but I don’t want to and since it is not causing RLS I have nothing pushing me to stop… Bad, bad, bad…

I feel so defeated now that the Baclofen is not doing anything… I can’t go on walks anymore, in fact, I can barely make it to the kitchen without my cane… 10mg, 20mg, 30mg, and now I have built a tolerance. I feel so out of options, I will ask about Zanaflex when I see my neurologist but what, that will buy me a few weeks before I build a tolerance to that? I am so over this. I think it is time to get tested for the JC virus and go for Tysabri, at least for 2 years while I look for the next best thing and save up for stem cells. I was afraid of the PML virus (which can be fatal) but I am tired of living like this so now I understand why some people are willing to take that risk.

I do need to do more than just look for a pill to fix my problem. After some research I can say that I definitely have really tight hamstrings, I can barely just sit with my legs extended in front of me without feeling some tightness behind my knees… That is sad, could not imagine trying to touch my toes right now. So I am going to start stretching, I have to, I can not say I have tried everything until I have done some good stretching… I am sure that can help with a lot more but my goal is to simply better my walking. I do not want to have to use a cane around the house, I want to go on walks again, maybe after the right meds and stretching I can go on hikes one day, but, one step at a time, let’s start with making it around the house.

When Baclofen did help, here is my walking log:

DATE
DISTANCE
TIME
TEMP
07/30/12
0.5 Miles
12 Minutes
77F
07/31/12
0.5 Miles
12 Minutes
72F
08/01/12
0.9 Miles
27 Minutes
86F

I can’t fight like I used to, I am so overwhelmed with the immobility, pain, cog-fog, everything, I feel so static, my life is not moving. I really want to get back into school, didn’t think I could make this semester happen financially but I am going to try. I need to get out into the world, I am going crazy in the house. I need some kind of life back! I need fuel to fight! So I don’t know what class I can get into but I will start with just one, what ever that one may be. Was looking for a class that had nothing to do with, well, anything to just get out of my comfort zone but there does not seem to be anything available… What ever, I just want to have something to do and hopefully meet some new people because I have no one in my life. I feel so… UGH! I need fuel and motivation again!

Insomnia, pain, skin (sensitivity), spasticity, neck/jaw pain, clumsiness, all things I wrote down for the week. I know I had more but I stopped writing it all down, some of it I am sure I felt unnecessary as I always feel certain things, this was just the out of the ordinary (for me) stuff. Always something… Lots of joint pain lately I should add, my shoulders especially! I don’t really take Norco any more, major tolerance, so it is just a waste to take. I try to save it for when I really need it but it tends to still not work, even at 30/975mg… Pain is just part of life right? Pft…

So, I need to see about Tysabri, my MRI’s, work on getting my stem cell fundraising going again, see about new medication for spasticity and pain, try to get into school, start working on my novel (to get a non-MS life going again), and… Well, that is all I can think of for now… (I) have wasted away this year, and when I say “I”, I mean myself as an individual. If I had to describe myself without mentioning MS, I would not know what to say. I have been going through a bit of an identity crisis. Who am I? I am a bit of a blank slate, I need to reinvent myself. I think I need to start with school and writing, I just need to… Start… I need to know who I am again. It is going to be hard when MS is such a huge part of my life but I can’t wait for ever to get things going since MS will never really go away… I just want to have more to talk about than MS when I meet someone new in life. I hate not knowing what to say…

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11 Responses to Multiple Sclerosis Spasticity, Tysabri?

  1. Anonymous says:

    Need to be in constant physical therapy for those legs — in order to not get into permanent contracture.

  2. Matt Allen G says:

    Yeah, I was going to talk to the doc about that but, getting a ride is my issue… hmmm…. will figure it out….

  3. Anonymous says:

    Don't know if it's the cog fog, but I feel like a blank slate many times, and often I feel like I have nothing to say. I seem to keep fairly quiet and not talk a lot. I think there is a bit of apathy going on too, regarding myself and my activities. I care a lot about others, but somehow if I'm at home, I don't have the energy to phone a friend and talk or invite people over. I know some of my lesions are in the frontal lobes. Thats where planning, organizing, starting a project, seeing it through, concentration and clear thinking are affected and I can certainly attest to that.The MRI next week, will show me if the lesion is any bigger as it has been increasing in size for the past 3 years. Only slightly, but any increase doesn't sound good to me! lol
    You keep hanging in there Matt. I believe the research surrounding MS is really active and who knows what someone will discover to help us. I really can truthfully say that you will still be a young man, when doctors will be able to give you medication of some sort to improve your status with MS and you will enjoy many benefits. Just do small bits for now, so you don't get too frustrated and feel like giving in or up. Just small bits….anything really….do one thing today you didn't do the day before it and then do that again each day ahead of you. ONE small thing and write that down! lol

  4. Matt Allen G says:

    Haha, well, fingers crossed haha

  5. Anonyms says:

    I took Zanaflex and got some of the best sleep I ever had for a week and then tolerance quickly built up and it lost efficacy.
    I don't take it when I have cannabis available.
    Be careful when you start it. I was warned not to get up at night because I could fall due to muscle weakness. Mine were a bit weak in the morning following, but I am sure I wasn't sleeping long enough.
    I have some notes on it here: http://anonymsbs.blogspot.com/p/zanaflex.html

    Good Luck.

  6. Matt Allen G says:

    So does the canabis help your spasticity?

  7. Anonyms says:

    Its a big help for me. My life quality is much better when I have it.

    It's not for everyone, but I would certainly encourage you to see what the California medical cannabis community has to offer.
    The advancements in edibles and smokeless products they make now is unreal. Tinctures are great, I have made some myself.

    The edibles and tinctures are great for sleeping. The effect can last throughout the night for a sound twitch-free sleep.

    Also wrote on Cannabis: http://anonymsbs.blogspot.com/p/cannabis.html

  8. Matt Allen G says:

    I just need some spasticity relief, I can care less about the rest at this point, just want to walk well again…

  9. Anonymous says:

    You sounded so sad, I wish I could do anything for you…
    -Dao

  10. Matt Allen G says:

    It's OK Dao, good days and bad days, then more bad days you know? Haha, it will take time but I will figure this out!

  11. Prayers your way brother.

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