my follow-up appt...

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my follow-up appt...

Postby RedPenguins » Sat Feb 14, 2009 3:02 am

Hi everyone,

Well, on Tuesday night I took the red-eye out to Baltimore from Los Angeles. I arrived in Balti at 9am...headed to JH. My appointment wasn't until 1pm. Had three hours to kill and they let me rest in the "stretcher room" - where there are two stretchers, no door, just a curtain. People came in and out, but I just rested.

At 1pm, Dr. Hammond came to find me. We talked and he performed a bunch of tests. I tested better than I did in June before treatment.

Dr. Kerr joined us and we talked about options.

They both dismissed the notion that weight was any factor in how well the treatment worked or didn't work - or with dosing.

I also told them that I was having a hard time with the Copaxone. Even after 6 months of it, I am still having reactions. I then asked them if they had ever tried one shot. A dose of copax wouldn't hurt anyone - which they confirmed. However, they have never tried it. I pressed them to get their hands on a shot and see what it is like. I feel like I am giving myself a bee sting each and every night. It is anything but pleasant. Don't think they will do it - though I think we should present a united front and pressure them into injecting themselves! They told me that if it meant I would stay on the copaxone longer, don't do it every night. I will continue to do it every night - though if I miss a dose, I will not beat myself up as I usually do (in 6.5 months, I maybe have missed 3 doses). I was again told that I'd only need to be on it for a year.

I'm back in a wait-and-see place again. My next MRI is in 6 weeks or so... and depending on what it shows, will determine if I need/want a re-dose of the HiCy. They are open to redosing if necessary....but they really think that there is no reason I will not go back to how well I was doing before this relapse - and that I will continue to improve.

I flew out of Balti on a 5pm flight and was back in LA by 9pm.

So that was my whirlwind 22 hr trip!

~Keri
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Postby chrishasms » Sat Feb 14, 2009 7:23 am

I thought the same thing about reactivation and re-treatment.

I have only had 1 Copaxone shot that literally stung. I had my wife take it out and stick me someplace else and it still hurt so I got a new shot and was fine.

That's a good point about the year after with the shot. I'm due to stop in March.

I can't wait until that three month mri coming up for you. It'll be a good test to see if HiCy and Copaxone worked.

My one new, post treatment lesion resolved itself and healed itself. It's gone. That is because the Copaxone taught my body something to do the right way. Chances are now, I probably will never have any new lesions and if I do they should heal themselves. (The hope anyhow)

I hope your lesion has healed as well. I'm just happy my website may be able to still be Chrishadms lol.
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Postby steven73 » Sat Feb 14, 2009 8:04 am

Congrats on some better than expected news Keri. I mean, at least it's not a given that you'll need retreatment. I'm sort of amazed/surprised at how much stuff the Hopkins docs describe as "Yep, that's normal." Serious paraphrase there. :P My MRIs are unchanged but I'm still struggling. I'll see them a week from Wednesday. I missed my January appointment because of the weather up there.
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Postby chrishasms » Sat Feb 14, 2009 9:52 am

Stephen, how much rehab have you done?
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Postby steven73 » Sat Feb 14, 2009 10:24 am

chrishasms wrote:Stephen, how much rehab have you done?


Hey Chris,

That's where I'll admit to falling short. I did HiCy back in July but I didn't start PT until October. I've been going two to three times per week to basic PT. Your idea about a long term situation really appealed to me. I might as Dr. Kerr about a recommendation for something like that.
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Postby chrishasms » Sat Feb 14, 2009 2:06 pm

I have my therapy folks talked into treating me like Rocky training for a prize fight for the next 6 months.

My thought is this, with people with traumatic spinal cord injuries or brain injuries (stroke or otherwise) they will put these people through ridiculous PT hours after the injury. They say it helps the body to start to build any new connections.

My thought is with MS all the primary and secondary pathways may be screwed up, but maybe the 3rd, 4th, or 9th pathway is the one it will work with again. Without the intense rehab, and your body getting really sick of working that hard at something that should be easy, I believe if the MS is dead, it will develop the new pathway just out of frustration.

So I am about to go to war against MS damage, not the disease.
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Postby Sharon » Sat Feb 14, 2009 3:12 pm

Yes, Chris I agree with you

My thought is with MS all the primary and secondary pathways may be screwed up, but maybe the 3rd, 4th, or 9th pathway is the one it will work with again. Without the intense rehab, and your body getting really sick of working that hard at something that should be easy, I believe if the MS is dead, it will develop the new pathway just out of frustration.


I have found that my large hamstring muscle is one muscle that has been weakened by the MS. But, guess what? There are two smaller hamstring muscles which I am strengthening to take over the weakness in the large one. I am also doing a lot of mental imaging - supposedly, neurons will fire even if you just mentally picture the movement.

Sharon
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Postby CureOrBust » Sat Feb 14, 2009 4:52 pm

Sharon wrote:I am also doing a lot of mental imaging - supposedly, neurons will fire even if you just mentally picture the movement.

this post has a quote from an article on the topic
Therapeutic Reflection
So-called mirror neurons in the brain mimic other people's movements and help stroke victims regain lost abilities
By Giovanni Buccino and Ferdinand Binkofski

http://www.thisisms.com/ftopic-4807-0-days0-orderasc-.html
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Postby barbbelle » Sun Feb 15, 2009 1:45 pm

Keri~
HI girl! I cannot believe how tired you must have been going literally across the country and back in less than one day! Like I have said before...you are incredible! I also think that it is so funny that you challenged the JH docs to inject themselves! Of course, they wouldn't do that...but, next time I'm there I'll ask them to do it also. Let's see what happens! They are really nice down there, very reassuring and calm. I sometimes wonder if they do that to just blow me off or if they really do want us all to be patient and trust them. Time will tell!
As far as rehab, my insurance ran out of PT benefits about October! It works on a July to July basis and so that left 9 months of no PT. I joined a fitness club that has a pool and get a 30 minute "private lesson" (like the little kids get :)_2 times a week. She helps me stretch and work on quads and hamstrings. Then, I force myself to go 2 more times a week and just walk. I am definitely getting stronger but tired. Have to be careful not to overdo! I can do so much more in a pool than on land. Dr. Kerr says that in 3 months time, I should be able to do on land what I do in the water........like I said...time will tell!
Take care everyone~! Keri, hang in there and know I'm still prayin for you! Steven....try to get motivated to move! You will be glad you did~
Barb
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Postby HiCy » Tue Feb 17, 2009 6:20 pm

To all,

It is great to see all of you really pushing with the PT. I can't express enough the importance of exercise in everyones recovery. I also don't think you can push too hard.

Chris,

You will get results with your new Rocky approach. You will have days after you work out that you feel terrible but don't give up on it. Some days you push harder and other days are active but more of a recovery. This is a typical training routine for any sport. Good luck.

I am in the gym or active with other activities almost every day of the week. Some days are hard but the benefits are there.

Good luck

HiCy
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