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LLLEARNER
Brown Belt
Brown Belt

Joined: 10 Feb 2016
Posts: 687
Location: Central Maine

PostPosted: Sun Feb 26, 2017 1:13 pm    Post subject: Reply with quote

JR 137 wrote:

If earning your black belt is your way of sticking your middle finger up at MS, then do it. Not just with one hand, but both hands, held up high, right in its face!


Does this mean I should try for two Black belts?
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"Walk a single path, becoming neither cocky with victory nor broken with defeat, without forgetting caution when all is quiet or becoming frightened when danger threatens." ~ Jigaro Kano
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LLLEARNER
Brown Belt
Brown Belt

Joined: 10 Feb 2016
Posts: 687
Location: Central Maine

PostPosted: Tue Mar 07, 2017 8:31 pm    Post subject: Reply with quote

Wow! This was my first real night of training since the steroid infusions have had a chance to work. Now there may have been some mitigating factors with my late night last night, but I have done that before without issue.

A few days after my last infusion my legs went from numb to tingly. I figure it is a sign of the inflammation decreasing. It feels like warming back up after being cold, but milder. The doctor warned me that it could take a week for the treatment to be effective if it was going to at all.

I felt like I was going to pass out and throw up. I took a time out when it got too bad, but worked through what I could. I just felt drained, and mentally muddled. Hopefully, it will pass soon and I will be slightly less gassed in the future.

But, I did have fun.
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"Those who know don't talk. Those who talk don't know." ~ Lao-tzu, Tao Te Ching

"Walk a single path, becoming neither cocky with victory nor broken with defeat, without forgetting caution when all is quiet or becoming frightened when danger threatens." ~ Jigaro Kano
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sensei8
KF Sensei
KF Sensei

Joined: 23 Feb 2008
Posts: 14520
Location: Houston, TX
Styles: Shindokan Saitou-ryu [Shuri-te/Okinawa-te based]

PostPosted: Wed Mar 08, 2017 6:08 pm    Post subject: Reply with quote

That's great news there, AND, you had fun while doing it!! Hang in there and to it to it!!



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LLLEARNER
Brown Belt
Brown Belt

Joined: 10 Feb 2016
Posts: 687
Location: Central Maine

PostPosted: Fri Apr 07, 2017 4:42 pm    Post subject: Reply with quote

Today I had another doctor appointment to discuss medication.
I have spent the last month studying the therapy data.
Last week a new drug was approved by the FDA. Although the data looked promising, I was hesitant about being a first generation adopter. However, the side effects of all my other choices did not look promising. Price is not that much of a concern as most MS therapies are priced roughly the same.
Apparently, there is a trial that I am probably eligible for involving that drug. I told them I was interested in the trial for the new one. So, I should be hearing from them soon.

I should probably mention that the new one is not brand new. It has been used in Europe for some time. It is also kissing cousins with another drug used for MS off-label. While it is new, there are more knowns.
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"Those who know don't talk. Those who talk don't know." ~ Lao-tzu, Tao Te Ching

"Walk a single path, becoming neither cocky with victory nor broken with defeat, without forgetting caution when all is quiet or becoming frightened when danger threatens." ~ Jigaro Kano
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MatsuShinshii
Black Belt
Black Belt

Joined: 15 Aug 2016
Posts: 1423
Location: Kentucky
Styles: Machimura Suidi Rokudan, Ryukyu Kenpo, Kobudo, Judo

PostPosted: Mon Apr 10, 2017 4:57 pm    Post subject: Reply with quote

I just came across this post. I am sorry to hear about the news but I am inspired by your attitude. Keep your chin up and push ahead as long as you can. You'll be in my prayers.

Out of curiosity what does your doctor say about this medication?

I only ask because my father, before he passed, had read about a medication they were using over sea's but could not get it here, but it worked in holding off the disease and prolonged life in some case up to 20 years. He told me that even though it may be used in another country and works, you sometimes can not get it here because it first has to get passed the FDA and that could take years if not decades even though it's been used for the same over sea's.

It might be worth trying if your doctor thinks highly of it or it has enough compelling data.
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LLLEARNER
Brown Belt
Brown Belt

Joined: 10 Feb 2016
Posts: 687
Location: Central Maine

PostPosted: Mon Apr 10, 2017 6:22 pm    Post subject: Reply with quote

Thanks Matsu.



The Doc is good with it. She wants to treat me aggressively. The one I chose and was just approved 2 weeks ago I think is Ocrevus. But, the side effects of the other treatments included Progressive Multifocal Leukoencephalopathy. PML is an untreatable, incurable brain infection that I have a slight risk for due to a positive test for John Cunningham virus JCV. I tested within the threshold (barely) of being eligible for some of the other treatments. Some of the ingredients in other meds can allow it to pass the blood brain barrier BBB. Most of the drugs suppress the immune system as well. I am more okay with having severe physical problems in the far future than I am with having an incurable brain infection possibly sooner. At least if I have to I can work with a physical problem, but not with severe physical problems.
And with it being a new but not totally unknown drug (it is kissing cousins with another) I chose that one with the lower side effects. It only targets 1 kind of white blood cell rather than a bunch of them. It is also easy for the administration. The initial treatment is 2 half doses 2 weeks apart by a 1-hour infusion followed by a 1-hour observation. Then 1 full dose infusion for 1-hour and 1-hour observation every 6 months. Rather than multiple self-injections each week or pills or more frequent infusions.
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"Those who know don't talk. Those who talk don't know." ~ Lao-tzu, Tao Te Ching

"Walk a single path, becoming neither cocky with victory nor broken with defeat, without forgetting caution when all is quiet or becoming frightened when danger threatens." ~ Jigaro Kano
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SaiFightsMS
KF VIP

Joined: 28 Oct 2001
Posts: 6397
Location: Ohio
Styles: Shotokan, Shorin Ryu, Shi-to Ryu

PostPosted: Sun Apr 16, 2017 8:31 am    Post subject: Reply with quote

Patrick reached out to me to chime in on this. I have had ms for 37 years. My training helped me regain a lot of function and maintain it as long as possible. When I began training at the first test I went to as i watched Rohai being done and the crane stance I said there is no way I will ever be able to do that. Then one day there I was learning to do Rohai. I also did tsukenshita haku no Sai with crane stance and my test with that kata went very well. Martial arts training is fairly well rounded when you think about it. We do a lot of flexibility work, strength, endurance work and cardio work. Deep stances and shiko dachi helps strengthen out legs and help keep them strong. Working kata stringing a series of them together will work endurance. Kihon training works with muscle memory.

One thing we all need to learn to do is to learn to listen to our bodies. To learn when to push the limit and to learn when not to because that day it will be detrimental. I began training in my chair at first and then graduated to standing next to it for part of the drills hanging onto it for balance. Then onto moving up and down the room with both forearm crutches then a pair of canes. Then as it turned out my spot in the lineup was next to the wall which helped me a lot when I was still working on balance. I came to a point where I was doing everything everyone else did and the same way they did. As i progressed in rank the time I spent teaching white belts they had no idea that I had a physical handicap. Well maybe the did notice I was the only one training in shoes.

Things did progress again after a serious exacerbation and I was no longer training the way I was before. By then I had achieved the rank of nidan. And to earn that I did the same thing everyone else did. What I took with me was something internal that had gradually been sinking into every day life. The year I played quad rugby sitting in an armor plated wheelchair i felt like a warrior.
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LLLEARNER
Brown Belt
Brown Belt

Joined: 10 Feb 2016
Posts: 687
Location: Central Maine

PostPosted: Sun Apr 16, 2017 2:31 pm    Post subject: Reply with quote

So far my experience has not been like yours. I am aware and thankful how mild my condition has been. I really thought it was a pinched nerve or something. I do have better balance on my left leg, but I do find that the 3 plane movements help. I did read your thread detailing how you handled MS and training. But, we will see how mine will progress.
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"Those who know don't talk. Those who talk don't know." ~ Lao-tzu, Tao Te Ching

"Walk a single path, becoming neither cocky with victory nor broken with defeat, without forgetting caution when all is quiet or becoming frightened when danger threatens." ~ Jigaro Kano
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Patrick
KF Administrator

Joined: 01 May 2001
Posts: 27104
Location: Los Angeles, California

PostPosted: Thu Apr 20, 2017 12:29 pm    Post subject: Reply with quote

Thanks for taking the time to add your thoughts here, SaiFightsMS.

Patrick
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LLLEARNER
Brown Belt
Brown Belt

Joined: 10 Feb 2016
Posts: 687
Location: Central Maine

PostPosted: Thu Jun 29, 2017 5:49 pm    Post subject: Reply with quote

So far...

I have had a month of what seems like slight improvement. The numbness is no longer up to my navel, but spends most of its time in my feet. I have been able to take stairs 2 at a time down, like I used to. I have been given the clearance to begin Ocrevus after July 17th (6 weeks after my tetanus booster). I did qualify for financial aid which will be a big help. It will not relieve symptoms, but (hopefully) prevent new lesions.

I asked my neuro doc what I can expect as far as impacts to the head with MS. YAY!!! She cleared me to get hit in the head!!!
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"Those who know don't talk. Those who talk don't know." ~ Lao-tzu, Tao Te Ching

"Walk a single path, becoming neither cocky with victory nor broken with defeat, without forgetting caution when all is quiet or becoming frightened when danger threatens." ~ Jigaro Kano
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