Progress Update – Remember This?

 Well I know I kind of stopped doing this but I kind of wish I hadn’t, I think I should have done it maybe once a month since Tysabri started clearing things up. Now that things have pretty much settled and any changes to my symptoms have to be made through diet and life style changes (mostly) I wanted to mark where I am now before I try to experiment with healing some of my residual symptoms. So this is just a quick post updating my symptoms and medication.

Medication

Tysabri (infusion) [once a month]
Acthar (Injection) [as needed – about once every 2 months]
Baclofen (pill) [10mg a night]
Temazepam (pill) [30mg as needed]
Citalopram (pill) [20mg a day]

Symptoms (Main)

Spasticity in Legs
Muscle Spasms (Arm/Shoulder at night, fine with Baclofen)
Optic Neuritis (OK with glasses)
Poor Balance (Not too bad right now)
Horrible Cognitive Function (especially memory)
Fatigue (Really bad from heat)
EDIT – 6/24/13
Sound Sensitivity (Sensitive startle reflex)
Heat Sensitivity (Once it hits 75F/23C I am fine being outside but don’t want to move too much. 80F/26C is my activity limit and then sever fatigue kicks in)

Notes

There are probably way more smaller symptoms that come and go everyday but these are the consistent ones that really effect my life in some way. If I could better these symptoms (especially my spasticity) I would be happy. I am thinking about asking my doctor about Botox for my spasticity because there is so much tone in my legs that I have not been able to even break a job and I have tried a lot but still the best I can do is walk which is more than I thought I would be able to do before but to heal is not to grow content. I also want to get into school of try that Lumosity thing to exercise my brain because I am running so slow up there right now, it’s getting embarrassing…

12 thoughts on “Progress Update – Remember This?

  • June 23, 2013 at 6:41 pm
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    Have you tried KlonoPIN or generic clonazePAM? I take 1mg at night and it helps a lot.

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  • June 23, 2013 at 7:46 pm
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    yes, long time ago, for insomnia, it helped at first bit I took it too much so it lost it's effects.

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  • June 24, 2013 at 1:34 pm
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    I couldn't live in the desert. My fatique comes & goes, but sometimes I feel so weak when it's hot, like yesterday I was at flea market, thought I was gonna pass out after it got too hot out. guess I pushed it too much

    sleekcartim

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  • June 24, 2013 at 2:25 pm
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    I have to add two things to my symptoms, one of witch you just reminded me, HEAT SENSITIVITY

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  • June 25, 2013 at 4:43 am
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    Hey, if your are depressed, ask your doc to up your Citalipram. You are on a pretty low dose. It might help.

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  • June 25, 2013 at 11:46 pm
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    I WAS on 40, downed to 20 and felt no different but the summer is getting to me a bit when I AM NOT active so the key for me is to stay active…

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  • June 26, 2013 at 6:45 pm
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    Hey Matt – I just read your About page,and I know I don't know you, but I can't even tell you how excited I was to learn that you're doing better!!! What you've been through sounds terrible, and I'm so glad that you're in a better place now.

    I don't have MS, but I have Myasthenia Gravis. I was diagnosed when I was 14, and I'm 33 now. I was pretty sick for a LONG time, but it's pretty under control w/meds now. There are still times when I can't stop looking in the mirror and smiling – just because I can (losing my smile was one of my first symptoms).

    I recently started a small business that stems from my MG experiences and my reliance on medication to get through the day. The products are high quality stainless steel keychain pill holders, but the part I'm really excited about is that I'm working on a partnership to donate a portion of my sales to promoting research across ALL autoimmune diseases. I'm just starting to try and raise awareness about my new website, and I was wondering if there's any chance you'd be willing to check it out and potentially share it with your community? The website is http://www.thepillholder.com.

    Either way, I really hope you continue to do well!!

    Oh, and you can email me at christine.a.boerner@gmail.com

    Chris

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  • June 26, 2013 at 8:06 pm
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    Hi! Nice to meet you! So is your condition under control? I have never met anyone with MG before so I am not sure how daily life is.

    I used to carry pills around, I had to, lately I have not needed to but many people with MS do.

    One thing I remember being an issue (since I had a pill holed just like yours but mine was cheap in quality) is I would put it on my key chain which had a clip on it so I could clip it to the back of my jeans and let the keys hang in my back pocket so they were not jingling. Problem was, when I sat down, I would every so often sit on the case just right that the loop in which the key chain ring fit through would brake.

    I always wished there was something to solve this or at least something made of a stronger metal.

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  • June 28, 2013 at 5:47 pm
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    Hi Matt, My name is Shawnie and my story is very similar to yours. I was diagnosed last year with MS but have had it for quite some time. My biggest problem is my legs and getting them to work properly. The spasticity in my legs makes it very hard to keep going some times. I work 12 hours a day on my feet. It is getting harder day by day to continue to work. I know I will have to leave my job soon. I have to call in sick either because I can barely walk or am wiped out by the heat. I am on baclofen for it and take tramadol for the pain. But they dont seem to help much. This week neuro put me on a new pill soma,. Dr said it will take a week to start helping. I will let you know if it does.
    Well stay cool and it is nice to finally say hi and really like your site and think it is very informational.

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  • June 28, 2013 at 5:56 pm
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    Hi! Sorry to hear you deal with the leg spasticity as well, baclofen does nothing for my legs, I take it to help with arm twitching at night. Soma, I am familiar with that but never took it for MS pain. I think I am going to ask my neuro about botox injections for this spasticity because nothing else is helping…. At this point, if my legs wprked properly, I might not feel like I have MS everyday…

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  • June 28, 2013 at 7:24 pm
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    Let me know if you come across any thing that works. I feel the same as you. If I could fix the spasticity I consider everything else anoying but tolerable.

    Reply

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